MS ARCHIVES NOV -SEPT 2006

2006-11-28T05:25:00.000-08:00

Results of study on prevalence of MS in Lewistown to be presented - Canton Daily Ledger
LEWISTOWN -- Results of a study on the prevalence of multiple sclerosis (MS) in Lewistown and four other small Illinois communities will be announced in a series of presentations at those five towns

Responding to citizen concerns about a perceived high number of MS cases in small Illinois communities, Health Systems Research of the University of Illinois College of Medicine at Rockford applied for a grant to study the prevalence of the disease in DePue, Lewistown, Morrison, Paw Paw and Savanna.

The grant was awarded in October 2002 from the Agency for Toxic Diseases and Disease Registry, a division of the Centers for Disease Control and Prevention. The project was funded as one of five areas of the nation to study MS and ALS (Lou Gehrig's Disease).

The study, which sought to determine local rates and compare them to national levels, has now been completed and the results will be announced at the meetings scheduled in the five small towns in Illinois.

Health Systems Research sought to find all individuals with MS and ALS who lived in the zip code areas of those communities from 1998 to 2002. Self-identifying individuals then completed information on their medical, residential and occupational history and gave permission for their medical records to be reviewed to verify the diagnosis, a press release said.

For more information contact Joel Cowen, principal investigator, at 1-800-854-4461 or joelc@uic.edu.

2006-11-28T05:17:00.000-08:00

Antibodies Against Myelin Protein Prominent in Primary Progressive MS
NEW YORK (Reuters Health) Nov 27 - IgG antibodies to the myelin oligodendrocyte glycoprotein (MOG) appear to participate in the more severe type of multiple sclerosis (MS), investigators in Germany report in the PNAS Early Edition, published online on November 27.

Of the self-antigens previously evaluated in MS patients, none has a proven biological activity, senior author Dr. Bernhard Hemmer, from Heinrich Heine University in Dusseldorf, and his associates note.

MOG is present at the outermost surface of the myelin sheath, and anti-MOG antibodies have been implicated in the pathogenesis of MS, making it a "promising target" for further investigation of its role in MS. Up until now, researchers have evaluated fragments or linear constructs of MOG.

To construct a more natural model of MOG, Dr. Hemmer's team transduced human glial cells with full-length human MOG cDNA.

Dr. Hemmer and his associates conclude: "The occurrence of antibodies with demyelinating properties further supports the pathogenic role of the humoral immune system in MS and calls for the development of B cell directed therapies not only for relapsing remitting MS, but also for primary progressive MS.MORE

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2006-11-27T10:34:00.000-08:00

OUR TECHS ARE WORKING ON IT...IT WILL BE FIXED SOON...HOPEFULLY!!

2006-11-27T00:56:00.000-08:00

Fatigue and sleep disturbance in multiple sclerosis
Considering the association of sleep disturbance and fatigue in multiple sclerosis (MS), we investigated the presence of sleep disturbances that may be related to fatigue by using objective and subjective measures. We included 27 MS patients with fatigue, 10 MS patients without fatigue and 13 controls. The Pittsburgh sleep quality index score showed significant differences between patient groups and controls. Beck depression inventory scores were significantly higher in fatigued than non-fatigued patients. Comparison of patient groups and controls revealed significant differences for time in bed, sleep efficiency index, sleep continuity index, wake time after sleep onset, total arousal index and periodic limb movement arousal index.

Our study confirms that MS causes sleep fragmentation in terms of both macro and microstructure. Fatigue in MS could be partially explained by disruption of sleep microstructure, poor subjective sleep quality and depression.

2006-11-27T00:50:00.000-08:00

Respiratory Muscle Strength Training: Functional Outcomes versus Plasticity
[Department of Communication Sciences and Disorders, University of Florida, Gainesville, FL.]
Respiratory muscle strength training is a paradigm that has been used for numerous years with a variety of populations including but not limited to spinal cord injury, chronic obstructive pulmonary disease, multiple sclerosis, Parkinson's disease, voice disordered, sedentary elderly, and healthy young. The respiratory muscle strength program discussed here is an expiratory muscle strength training and uses a pressure threshold device with a regimented treatment protocol. The primary purpose of the expiratory muscle strength training program is to promote strength in the expiratory muscles. The training protocol occurs five times per day, 5 days a week, and consists of ~15-20 minutes per day of training by the user at home. The device threshold is changed weekly by a clinician to maintain a threshold load of 75% of an individual's maximum expiratory pressure. The threshold setting of the device is always based on the individual's recorded maximum expiratory pressure generated into a digital pressure gauge.

Results of 4 weeks of expiratory muscle strength training protocols indicate up to a 50% improvement for healthy subjects, those with multiple sclerosis, and those with spinal cord injury. The potential transfer of expiratory muscle strength to functional outcomes is discussed, as well as how strength-training paradigms may influence cortical plasticity.

2006-11-27T00:30:00.000-08:00

Myelin to Blame for Many Neuropsychiatric Disorders... UCLA Department of Neurology
What makes the human brain unique? Of the many explanations that can be offered, one that doesn't come readily to mind is — myelin.

Conventional wisdom holds that myelin, the sheet of fat that coats a neuron's axon — a long fiber that conducts the neuron's electrical impulses — is akin to the wrapping around an electrical wire, protecting and fostering efficient signaling. But the research of UCLA neurology professor George Bartzokis, M.D., has already shown that myelin problems are implicated in diseases that afflict both young and old — from schizophrenia to Alzheimer's.

Now, in a report published in the journal Biological Psychiatry and available online, Bartzokis argues that the miles of myelin coating in our brain are the key "evolutionary change that defines our uniqueness as a species" and, further, may also be the cause of "our unique vulnerability to highly prevalent neuropsychiatric disorders." The paper argues that viewing the brain as a myelin-dependent "Internet" may be key to developing new and novel treatments against disease and aid in assessing the efficacy of currently available treatments, including the use of nicotine (delivered by a patch, not smoking), which may enhance the growth and maintenance of myelin.

Myelin, argues Bartzokis, who directs the UCLA Memory Disorders and Alzheimer's Disease Clinic, is "a recent invention of evolution. Vertebrates have it; invertebrates don't. And humans have more than any other species."

Bartzokis studied the reported effects of cholinergic treatments, using drugs that are known to improve a neuron's synaptic signaling in people who suffer diseases like Alzheimer's. Furthermore, he notes, some clinical and epidemiological data suggest that such treatments may modify or even delay these diseases.

Looking at such effects from a myelin-centric point of view, Bartzokis argues that cholinergic treatments may have nonsynaptic effects as well, perhaps by enhancing myelination and myelin repair — and the better the myelin, the more efficient the neuron signaling and our "Internet's" function. Specifically, such cholinergic treatments may enhance oligodendrocytes, a type of glia cell in the brain that produces myelin during the brain 's development and constantly maintains and repairs it as we age.

While more work needs to be done to fully understand the role of nonsynaptic cholinergic effects on brain development, said Bartzokis, his hypotheses can easily be tested through in vivo imaging of the brain to study the breakdown and growth of myelin. That will make it possible to directly test in humans the practical utility of the myelin-centered model of the human brain.

Ultimately, it could foster the development of novel treatments, as well as aid in assessing the efficacy of currently available treatments. These include the use of cholinergic treatments that include acetylcholinesterase inhibitors (used to treat Alzheimer's) and nicotine patches.

"Through these rather benign interventions," Bartzokis said, "such effects on the brain's vulnerable oligodendrocyte populations may offer exciting opportunities for the prevention of both developmental and degenerative brain disorders. They deserve much closer scrutiny."MORE: UCLA Department of Neurology

2006-11-27T00:24:00.000-08:00

Physical therapy arrives: Popularity surges for varied reasons - The Boston Globe
..."Physical therapy is booming. We can't get them out of school fast enough. Hospitals are crying out for physical therapists all over the country," said Dr. Jeffrey B. Palmer , director of physical medicine and rehabilitation at Johns Hopkins Medical Institutions.

Part of the growing demand is because the population is getting older and creakier. But much of it, particularly for problems like back pain, he said, "is the desire for conservative management."
Dr. Lyle Micheli , an orthopedic surgeon and director of sports medicine at Children's Hospital Boston, said he now sends 90 percent of patients "to physical therapy instead of surgery."

At the Spine Center at New England Baptist Hospital, Dr. Geno Martinez, who specializes in rehabilitation medicine, tells many patients that their back pain will improve if they get moving with the help of a physical therapist. Though some physicians still don't believe it, he said, "in reality, back pain, in general, is not a surgical condition."

For those with MS, said Palmer of Hopkins, physical therapy doesn't change the course of the disease, but it can help them move better within their limits.MORE - The Boston Globe

2006-11-26T08:54:00.000-08:00

Linda Beck: Do you believe in miracles? - Salisbury Post
By Linda Beck - Special to the Salisbury Post

"Have you ever felt a miracle taking place in your life? As Christians, we can identify with the miracles that were performed by our Lord and Savoir Jesus Christ during the time that He walked on this earth. He made the blind man able to see, raised Jarius' daughter and Lazarus from the dead and so many more stories of healing.

During my lifetime (soon to be 59 years), I've experienced several healing miracles. Some folks tend to look at the negatives instead of the positives and often ask that question, "Why?" Well, I don't know why I've had Myasthenia Gravis, Multiple Sclerosis, an AVM (arteio venus malformation) in my brain and a series of other health problems. But I do know that according to His Holy Word (the Bible), God does not give us more than we can bear. (His plans for me must have been that I would be able to carry heavy loads.) But there have been times when I thought I couldn't deal with another negative happening in my life and it would be like writing a book to share it all, but I just want to encourage other about the answers to prayer — real modern-day miracles in my life.

There was the period during 1973-1976 when I first experienced the effects of Myasthenia Gravis and was finally diagnosed with this rare progressive muscular weakness disease that had the potential of becoming very disabling. I became familiar with several people who had this disease and have since went to be with the Lord but after several years of ups and downs, it seems my case is now in remission. (Miracle #1)

In 1976, there was the night I nearly died on the operating table. I can remember hearing someone saying, "We're losing her." I also remember my prayers had been that God would heal the staph infection and enable me to return home to finish raising my two daughters. The healing was a long, slow process fraught with many ups and downs but my daughters are now 33 and 38 years old and those prayers were answered. (Miracle #2)

Then in November 1990, I was given a double dose of bad news when I was told I have Multiple Sclerosis, a central nervous system disorder, and an AVM (aterio venus malformation) in my brain which was identified as the cause of the seizures I had experienced in 1989. A miraculous little pill called Dilantin as controlled the seizure activity for 16 years. Praise God for doctors and medicines! (Miracle #3)

Then there were the major Multiple Sclerosis exacerbation in 1992 and the diagnosis of my husband's cancer followed by his death in February 1993. During that extended period of ups and downs, not even the doctors thought I would undergo the healing that led me to driving a car again (after six years of not driving) and being able to walk again, live alone and learn to swim at age 47. No one realized that God was preparing me to be able to travel to speak for Christian Women's Club to tell other women about our Lord and Savior Jesus Christ. (Me, a speaker? - Miracle #4)

Then, in July 2002, I underwent the most catastrophic Multiple Sclerosis attack I have ever experienced. Everything from my breast down was affected and I was told I would never walk again. For 29 days, my toes would not even wiggle and I had to use a transfer board to move from one place to another. Five months later, I was finally able to stand up for the first time after that flare-up. I started using a walker but fell several times so I resigned myself to using a power chair and an electric scooter that a stranger donated to me. (Miracle #5)

Two years later I was finally able to get in the water at the new YMCA by using the electric life. To the amazement of everyone I was able to float and swim again and with the help of the staff there, I have come so far. And that brings us up to the present. Amazing, God's amazing grace! That's what has been taking place. Two days now, I have been able to step out those last two steep steps from the hot tub. (Miracle #6)

This summer the Lord has enabled me to "play in the dirt" in the yard at the house He led me to build in 2002. I have been getting stronger and feeling the best I have since 2002. The buzzing, tingling feelingsMORE - Salisbury Post

2006-11-26T08:47:00.000-08:00

Woman accepts MS, ready to help others - Wapakoneta Daily News
Sitting on a dark green couch in her Plum Street living room looking through a box of old family photos, a 38-year-old single mother said she does not have the luxury of living in denial about her multiple sclerosis (MS) diagnosis.

“I just can't. I've got my daughter to think about. She's 12,” said Darla McCauley of Wapakoneta. “I'm not going to die of MS. I could die with it, but I'm taking care of myself, getting proper sleep and nutrition. It's all in the attitude, and I've got to survive.

“I've always been a single mother and I want to be there and be able to walk when my daughter graduates from high school,” she added. “I want to show her you can do whatever you want no matter what obstacles you face. I don't want it to interfere.”

McCauley, who suffers severe back and neck pain, face ticks and extreme fatigue from her MS, said she hasn't always been so accepting of the diagnosis she received on Mother's Day 2004MORE - Wapakoneta Daily News

2006-11-26T07:14:00.000-08:00

University of Rochester presses quest for stem cell breakthrough - Democrat & Chronicle Newspaper
Pursuit of new disease treatments is building momentum with the work of key researchers

(November 26, 2006) — Quietly but steadily, under the watchful eye of some of the nation's top scientists, hundreds of technicians and researchers isolate cells and scrutinize data in 18 immense laboratories at the University of Rochester Medical Center. They're teasing out the secrets of stem cells, the building blocks of the body, in the hope of finding cures for diseases such as Parkinson's, diabetes and multiple sclerosis.

Some of the work has sparked controversy because it uses days-old human embryos, which some researchers believe can develop into many tissues of the body and in larger quantities than possible with stem cells taken from adult tissue. In turn, discoveries using those cells may lead to many more treatments, for conditions as wide-ranging as spinal cord injuries and blood cancers.

But the issue is not as simple as many political pundits, and some scientists, have led the public to believe. Using stem-cell science to treat people may be close to realization for some conditions but many years away for others. Federal funding for new embryonic work is banned, but private funding is flowing. Using embryos could be vital for some discoveries but completely unnecessary for others.

One UR scientist, neurologist Dr. Steven A. Goldman, recently had a breakthrough, then a setback, in Parkinson's treatment. Yet he might be close to finding a treatment for some neurodegenerative diseases.

Details of the daily work of researchers such as Goldman are largely unknown to the public, if only because the science is so complex and arcane. But shining a spotlight on his lab may improve understanding of the research that could one day change medicine.

"To think, you can actually start to do the things you dream about," Goldman said.

UR expands reach

Directly across from Goldman's desk in the Arthur Kornberg research building next to Strong Memorial Hospital is a dry eraser board filled with scribbling. The notations would probably mean nothing to 99 percent of the population. But for Goldman, it's like reading the back of a cereal box. "It's pretty easy actually," he said.

Goldman is sketching out what is called a progenitor cell, a cell that leads to the formation of the brain's structures. But one has to determine how and why the cell changes to learn how to manipulate it for other purposes. That's where the mapping of the cell comes in, finding the different genes present in each cell that, with the help of molecular signals, cause the cell to turn into its final form.

The cell sketched in black marker on Goldman's board is an astrocyte progenitor, a cell that eventually turns into the star-shaped network of branches and fibers that make up the physical structure of the brain.

2006-11-26T06:36:00.000-08:00

Getting his life back, one step at a time | Star-Telegram | 11/26/2006
High-tech device helps a martial artist learn how to walk again

[photo: Physical therapist Debbie Nystrom, left, and rehab technician Beth Peebles position Erwin Villezon in the AutoAmbulator.]

[photo: On a screen, therapists can monitor Villezon's progress on the AutoAmbulator, which simulates walking. "I want to get back to walking the way I once did," he said.]

[photo - Erwin Villezon looks in a mirror while on the AutoAmbulator this month. "It has given him confidence and added normalcy to his life," said his wife, Bobbie Villezon.]

By JAN JARVIS
STAR-TELEGRAM STAFF WRITER

Erwin Villezon pushes himself to walk, even as his right foot drags on the ground.

He makes himself talk despite a tongue that refuses to cooperate. And he forces himself to recall names of people he has no clear memory of.

The same drive that won him movie roles, stuntman jobs and national recognition as a martial artist is now helping him recover from two strokes and tuberculosis in his brain.

As he struggles through physical therapy at the HealthSouth Rehabilitation Hospital of Arlington, Villezon, 46, amazes those who remember how helpless he was a few months ago.

"He would just lay there and sleep; he had no emotions," said Bobbie Villezon, his wife of 26 years. "I've watched him more and more grow back into being my husband."

Three times a week, Erwin Villezon is suspended in a harness that holds him upright over the treadmill. Robotic arms help him move his legs and replicate normal walking patterns.

The AutoAmbulator was developed by HealthSouth Corp. and is being used to rehabilitate people in centers across the country. For people with abnormal gaits caused by spinal injuries, MS and other conditions, the machine may be a path to walking again.

The device simulates walking while supporting the person's weight, said Melissa Higgins, a physical therapist at the HealthSouth facility in south Arlington. It also improves circulation by moving the legs and builds strength through weight-bearing movements.

But it's the psychological effect -- when patients see themselves moving in a mirror -- that often makes the biggest difference.

"People are able to see themselves upright," Higgins said. "Some people have not had the experience of walking in years."
MOTR - Star-Telegram

2006-11-25T08:26:00.000-08:00

FREE BOOKLET DOWNLOAD: "MS Essentials 21: Exercise and physiotherapy: How exercise can help people with MS improve their quality of life" [UK MS Society]

Exercise helps to keep us fit and it does not have to be a chore. That is as much the case for people with multiple sclerosis as anyone else. But what is right for one person who has this very variable, often fluctuating condition may not be right for another.

This new 20-page booklet from the MS Society sets out to help people with MS find the exercise regime which will suit them best and fit into their lives. It begins by explaining how regular exercise can help minimise loss of muscle strength and fitness, unwanted changes in weight and weakened bones.

Different types are described, ranging from aerobics and using small weights to stretching and posture exercises. The booklet also suggests particular exercises for specific MS symptoms, including fatigue, balance, continence problems, anxiety and depression. It describes how physiotherapy can help to improve movement and other function of the body, and how to go about getting the treatment. A section is devoted to exercise for those more seriously affected by MS. CLICK HERE

2006-11-25T08:14:00.000-08:00

Show Your Support: Help Increase Funding for MS: National MS Society
The National Multiple Sclerosis Society has broadcast an Action Alert to increase federal funding for medical research for multiple sclerosis therapies. Anyone touched by MS can show support by signing a petition, which the MS Society is circulating in an effort to collect 200,000 signatures. By providing your signature, you are asking for federal funding to gain a better understanding of multiple sclerosis's causes, leading to more treatments and possibly a cure.CLICK

2006-11-25T08:07:00.000-08:00

PDL BioPharma Announces Roche To Discontinue Co-Development Of Daclizumab
PDL BioPharma, Inc. (Nasdaq: PDLI) announced today that Roche will discontinue its agreement with PDL to jointly develop and commercialize daclizumab for organ transplant patients on longer-term maintenance therapy. Roche made this decision subsequent to a periodic internal review of its development programs. This decision follows another decision by Roche earlier this year to discontinue its involvement in the co-development of daclizumab for the treatment of asthma.

In a separate collaboration, Biogen Idec and PDL are developing daclizumab in multiple sclerosis. "We are evaluating the overall transplant maintenance indication opportunity for daclizumab, while we continue to support the ongoing studies of daclizumab in relapsing/remitting multiple sclerosis, and anticipate results from the ongoing Phase 2 CHOICE study, which is testing daclizumab in combination with beta-interferon, during 2007," said Mark McDade, Chief Executive Officer, PDL BioPharma. MORE

2006-11-25T08:02:00.000-08:00

BioMS Medical Raises $: "BioMS Medical Corp ('BioMS' or the 'Corporation') (MS), a leading developer in the treatment of multiple sclerosis (MS), today announced that it has completed a private placement of 6,128,957 million units at a price of CDN $3.41 per unit, for gross proceeds of CDN $20.9 million. It is anticipated that a further closing of approximately 880,000 units for gross proceeds of approximately $3,000,000 may occur within the next two weeks."MORE

2006-11-25T07:51:00.000-08:00

Turkey Bowl XXXI -- to fight MS
[Photo: Turkey Bowl organizer Brian Quick, right, talks with his sister, Lisa, at this game. Turkey Bowlers raised more than $5,000 to benefit Lisa, who has multiple sclerosis.]
Brian Quick established the game as a high schooler in 1976. It took on new meaning and status as a fundraiser after Quick's sister, Lisa, was diagnosed with multiple sclerosis a short time later.

Now players must raise at least $50 to get into the three-hour game at Wilde Field outside Lisle Junior High School.

Quick said organizers hope to generate more than $5,000 this year for Lisa and MS research, bringing their grand total since the fundraiser began to more than $115,000.

Six of the 30 players in Friday's Turkey Bowl XXXI were among the original group that got together more than three decades ago.READ MORE

2006-11-24T11:17:00.000-08:00

Effectiveness of non-pharmacological interventions for fatigue in adults with multiple sclerosis, rheumatoid arthritis, or systemic lupus erythematosus: a systematic review. -- Medline Abstract
"This paper reports a systematic review of non-pharmacological interventions for fatigue in adults with three common autoimmune conditions. Background. A considerable proportion of people with multiple sclerosis, rheumatoid arthritis, and systemic lupus erythematosus experience compromised quality of life due to fatigue. Recent reviews of pharmacotherapies for fatigue in these conditions remain inconclusive, and systematic evidence for effectiveness of non-pharmacological interventions was unavailable...

Most interventions were tested with people with multiple sclerosis. Exercise, behavioural, nutritional and physiological interventions were associated with statistically significant reductions in fatigue. Aerobic exercise was effective, appropriate and feasible for reducing fatigue among adults with chronic autoimmune conditions. Electromagnetic field devices showed promise. The diversity of interventions, designs, and using 24 different instruments to measure fatigue, limited comparisons. Conclusion. Low impact aerobic exercise gradually increasing in intensity, duration and frequency may be an effective strategy in reducing fatigue in some adults with chronic auto-immune conditionsMOREt.

2006-11-24T10:28:00.000-08:00

MED STUDENT WITH MS...AND INSURANCE PROBLEMS

[Ann Neurol. 2006 Nov 21;60(5):A10-A11 [Epub ahead of print]
"A talented medical student at our institution was recently diagnosed with multiple sclerosis (MS). beta interferon was prescribed; however, her annual cap from student health insurance coverage for outpatient drug expenses is only $3,000, a sum that would be exceeded within 3 months and leave her without coverage for symptomatic medications also required for her care. Unable to pay for the treatment from personal resources, she qualified to receive beta interferon without cost from a universal access program established by the manufacturer. Unfortunately, it was evident within a few months that she had a poor therapeutic response, so her physician prescribed natalizumab. Her health care plan requires that infusion therapy be given at the hospital's infusion center, yet for various reasons, the drug was not yet approved by the formulary. She remains unable to receive the drug"

2006-11-24T08:10:00.000-08:00

Laverne and Shirley Star Donates to MS
Michael “Lenny” McKean appeared on Celebrity Jeopardy this month. Michael competed against fellow stars Regis Philbin, Martin Short, Susan Lucci, and Curt Schilling. The winner got to allocate $50,000 toward his/her charity of choice, and each participant is granted $25,000 toward his/her favorite charity just for joining the show. McKean has committed to donating his money to the National Multiple Sclerosis Society in honor of his life-long friend David “Squiggy” Lander. The two are known as the “Lenny and Squiggy” duo from the popular 1970s TV series Laverne and Shirley. Lander was diagnosed with MS in 1999 and has been an active spokesperson for the disease since then. Last fall, McKean generously donated the proceeds from his appearance on Celebrity Jeopardy to the National Multiple Sclerosis Society.

2006-11-24T08:03:00.000-08:00

CBS 4 News - National MS Health Expo Is November 19th
CBS4’s Maggie Rodriguez is the South Florida spokesperson for the National Multiple Sclerosis Society. She invites you to the Second Annual MS Health Expo this November 19th. The event is taking place at the Signature Grand in Davie, located at 6900 W State Road 84. The expo is from 9am to 2:30pm.MORE

2006-11-24T07:56:00.000-08:00

thedesertsun.com | ACT for MS shows off strong support at party:
"ACT for MS gave a smashing supporter party at Imago Gallery in Palm Desert.Board president Jim Conway and membership chair Buddy Sklar welcomed guests. All funds raised by this non-profit go directly to local low-income individuals with Multiple Sclerosis."MORE:

2006-11-24T07:37:00.000-08:00

NEW RRMS DRUG: MBP8298: BioMS Press Release
"Edmonton, Alberta, - BioMS Medical Corp (TSX: MS), a leading developer in the treatment of multiple sclerosis (MS), today announced that the first patients have been enrolled in its placebo controlled multi-center Phase II clinical trial of MBP8298 for the treatment of relapsing remitting multiple sclerosis (RRMS).

“This is a major milestone in our strategy to advance our lead drug into a second indication,” said Mr. Kevin Giese, President of BioMS Medical. “MBP8298 has shown potential to significantly delay disease progression in secondary progressive MS (SPMS) patients with immune response genes HLA-DR2 and/or DR4 and we look forward to evaluating the potential efficacy of our lead drug in RRMS patients, who represent an equally large patient population.”MORE: BioMS Press Release

2006-11-24T06:56:00.000-08:00

Men transmit MS more often to their children vs women: THE CARTER EFFECT
[Department of Neurology, Mayo Clinic College of Medicine, Rochester, MN]
OBJECTIVE: Multiple sclerosis (MS) is approximately twice as common among women as men. If men have greater physiologic resistance to MS, they might theoretically require stronger genetic predisposition than women to overcome this resistance. In this circumstance, men would be expected to transmit the disease more often to their children, a phenomenon known as the Carter effect. The authors evaluated whether the Carter effect is present in MS

RESULTS: Fathers with MS transmitted the disease to their children more often (transmitted: 18, not transmitted: 99) than mothers with MS (transmitted: 27, not transmitted: 296) (p = 0.032; OR: 1.99, 95% CI: 1.05, 3.77). Adjusting for both the sex of the affected child and multiple transmissions from a single affected parent, the sex of the affected parent remained as an independent risk factor for transmission of MS to children, fathers transmitting more often than mothers (p = 0.036; OR: 2.21, 95% CI: 1.05, 4.63).

CONCLUSIONS: The authors have demonstrated the Carter effect in multiple sclerosis (MS). These observations may be explained by greater genetic loading in men that leads to relative excess paternal vs maternal transmission. Linkage analysis in genetic studies of MS may be more informative if patrilineal transmission were given additional weighting.

2006-11-23T07:31:00.000-08:00

Hardships become blessings in the right light, families say | The News Tribune - Tacoma, WA
Trio lends strength to divorced father

I am a divorced father with multiple sclerosis. Some may think I don’t have much to be thankful for. But I have a great kid (who lives with me), a great mom who helps me, and a great friend.

I met him 30 years ago and he’s stuck with me through thick and thin. Imagine, three people who love me. I’m a lucky man.

- STEVE REYNOLDS, Tacoma

2006-11-22T23:59:00.000-08:00

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2006-11-22T06:27:00.000-08:00

New Therapies in Clinical Trials [Medscape-Med Students November
Fingolimod

MRI results for oral fingolimod (FTY720) were presented from the placebo-controlled, phase II study with active drug extension.[5] At 6 months, the median cumulative number of new and persistent enhancing lesions was 5 for placebo, 1 for fingolimod 1.25 mg (P < .001 vs placebo), and 3 for fingolimod 5 mg (P = .006 vs placebo). The mean number of cumulative enhancing lesions was 14.8 with placebo, 8.4 with fingolimod 1.25 mg, and 5.7 with fingolimod 5 mg. A statistically significant effect on T2 lesions was seen early between months 1 and 2 (P < .003 for both doses). Crossover from placebo to active fingolimod treatment at month 6 resulted in a significant reduction in enhancing and T2 lesions at month 12 on both doses.

BG00012

Oral BG00012, a fumaric acid ester, was studied in 257 patients who were randomized into 4 arms by Kappos and colleagues.[6] The 240-mg thrice-daily dose resulted in a 69% reduction in the total number of enhancing MRI lesions at weeks 12-24 (P < .001). The number of new and enlarging T2-hyperintense lesions with treatment at week 24 was 4.2 ± 5.4 compared with 2.2 ± 5.4 with placebo (P < .001). The number of T1-hypointense lesions was also lower with oral fumarate therapy (1.7 ± 2.5 vs 0.8 ± 2.0; P = .014). A 32% reduction in relapse rate was a trend, but it was not statistically significant.

Cladribine

Oral cladribine is currently being investigated in a phase 3, multicenter international trial for MS. Although the results of this trial are pending, Martinez-Rodriguez and colleagues[7] used the intravenous form of cladribine in 6 patients with aggressive relapsing-remitting disease. These patients were treated with intravenous cladribine 0.07 mg/kg/day for 5 days monthly in 2-4 courses. The EDSS decreased from 5.5 to 7.0 at baseline to 1.5-5.0 at 12 months. The mean annualized relapse rate dropped to 0.71 ± 0.55 from 2.67 ± 0.75 at baseline. After 1 year, cladribine was infused again in 4 patients due to new severe relapses. No significant side effects were seen.

Teriflunomide

O'Connor and colleagues[8] reported on a 144-week open-label extension study of the phase 2, randomized, double-blind, placebo-controlled teriflunomide trial. Teriflunomide demonstrated more than a 61% reduction in the number of combined unique active lesions on MRI compared with placebo over 36 weeks of treatment. In the extension phase, the 55 placebo patients were randomized to receive either 7 mg or 14 mg teriflunomide a day, and a total of 147 patients entered this phase. The placebo patients who switched to 7 mg teriflunomide had a 65% reduction in the number of combined unique active lesions (P = .02). Those placebo patients who switched to 14 mg teriflunomide a day had an 85% reduction in the number of combined unique active lesions (P = .02). Annual relapses were similar between arms at approximately 0.4 relapses per year.

Alemtuzumab

Alemtuzumab is a humanized monoclonal antibody that targets the CD52 antigen and is administered intravenously over 3-5 days annually. In a multicenter, rater-blinded trial of 334 relapsing-remitting patients, patients on alemtuzumab had a 75% reduction in relapse rate (P < .003) and a 60% reduction in the risk for sustained accumulation of disability (P < .05) compared with patients on interferon beta-1a 44 micrograms (mcg) subcutaneously thrice weekly.[9] Four patients developed immune thrombocytopenic purpura from 1.5 to 14 months after their last infusion. One patient died from cerebral hemorrhage after 2 weeks of unrecognized symptoms of immune thrombocytopenic purpura. The other patients were successfully treated with steroids ± rituximab. Compston and colleagues[10] presented thyroid-related findings from the year 2 interim safety analysis. With 2.2 years of median follow-up, 11.1% of patients on alemtuzumab had a thyroid-related clinical adverse event compared with 1.9% of patients on interferon beta-1a. Both hyperthyroid and hypothyroid adverse events were reported, including the development of Graves' disease in 3 patients. Antithyroid-stimulating hormone receptor antibodies and antithyroid peroxidase antibodies without clinical thyroid adverse events were seen in 16.7% of alemtuzumab-treated patients and in 11.3% of interferon-treated patients.

Daclizumab

Daclizumab, a humanized monoclonal antibody, binds to the alpha chain of the interleukin (IL)-2 receptor. Rose and colleagues[11] described results from a phase 1/2 trial of daclizumab in patients with relapsing-remitting MS. Eight patients on interferon therapy were treated with the combination of daclizumab and interferon. One patient developed a severe relapse prior to daclizumab and only received 2 doses at baseline and in 2 weeks. The other 7 patients received daclizumab infusions at 1 mg/kg every 2 weeks for the first month and then monthly for 5.5 months. Five patients were found to have no contrast-enhancing lesions on MRI at 6 months, so interferon was discontinued, and daclizumab was continued at 1.5 mg/kg monthly for a total of 27.5 months of treatment. Two patients had contrast-enhancing lesions at 6 months, so interferon was continued with daclizumab at 1.5 mg/kg monthly. A significant reduction of total contrast-enhancing lesions (P < .05-.001) and new contrast-enhancing lesions (P < .001) was seen compared with pretreatment scans and subsequent scans in 3-month intervals. A significant reduction in relapses also occurred (P < .001).

Anti-CD154 Antibody

Blockage of CD154 prevents costimulation of CD4+ T cells, which disrupt T-cell activation. Kasper and colleagues[12] assessed clinical and MRI progression in subjects with relapsing MS following blockade of CD154. Four cohorts of 3 relapsing MS patients each received 1, 5, 10, or 15 mg/kg of fully humanized monoclonal anti-CD154 antibody every other week for 8 weeks. After 5 years of follow-up, no statistically significant change in disability was found on the EDSS (baseline 2.3 ± 0.5, and 5 years 2.5 ± 1.6; P = .622). Higher doses of anti-CD154 significantly correlated with less disability at 5 years (P < .05). The average annual relapse rate over 5 years was 0.125, whereas the pretreatment rate was 1.0.

Combination Therapy

To assess the benefit of add-on therapy with azathioprine and prednisone, a randomized, double-blind, placebo-controlled study of 181 relapsing patients on intramuscular weekly interferon beta-1a was conducted.[13] Over 2 years, the annualized relapse rate was 1.19 for patients only on interferon. The relapse rate was 1.06 for those on azathioprine 50 mg daily and interferon. Lastly, the relapse rate was 0.80 for patients on azathioprine, interferon, and prednisone 10 mg every other day. The differences in the relapse rate and in the cumulative proportion of patients with sustained disability progression at 2 years were not significant. Triple-combination therapy was superior to monotherapy with interferon on T2 lesion volume (P = .015). Combination therapy was safe and well tolerated with similar rates of infection among the groups. Perhaps greater efficacy would have been derived had the investigators used higher doses of azathioprine.

Induction with mitoxantrone prior to glatiramer therapy was investigated in a randomized trial of 40 relapsing-remitting patients with at least 1 gadolinium-enhancing lesion at baseline.[14] The patients received either daily glatiramer acetate 20 mg subcutaneously for 15 months or monthly intravenous mitoxantrone for 3 months and then glatiramer acetate for 12 months. Mitoxantrone induction produced an 89% greater reduction in enhancing lesions at 9 months (P = .0001) than glatiramer alone. Patients who received glatiramer alone had a 47% reduction in enhancing lesion frequency at 9 months and an 87% reduction at 15 months. The relapse rate over 15 months was 0.16 for the mitoxantrone induction group and 0.32 for the glatiramer-only group. The relapse rates over 24 months were 0.24 for patients who received glatiramer acetate after mitoxantrone induction and 0.62 for patients who received glatiramer acetate alone. The reduction in relapse rate was a trend in favor of the combination therapy, but the trial design does not allow one to determine whether this result is superior to that observed by administering mitoxantrone alone.

Updates on Current Therapies

New Interferon beta-1a Formulation

A new formulation of subcutaneous interferon beta-1a without human serum albumin was studied in 260 patients in a single-arm, open-label, multicenter trial.[15] At 48 weeks, neutralizing antibodies greater then 20 neutralizing units/mL were detected in 13.9% of patients compared with 24.4% in the Evidence for Interferon Dose Response: European-North American Comparative Efficacy (EVIDENCE) trial. Persistently positive antibody incidence at 48 weeks was 2.5% compared with 14.3% in the EVIDENCE trial. The incidence of injection site reactions was 29.6% with the new formulation compared with 83.3% in the EVIDENCE trial. Flulike symptoms were higher at 70.8% compared with 48.1% in the EVIDENCE trial. Only 38% of patients who received the new formulation were taking anti-inflammatory medications or anilides at study day 1, which likely contributed to the higher incidence of flu symptoms. The lower incidence of neutralizing antibodies may be potentially clinically beneficial. The study is ongoing to assess the persistently positive neutralizing antibody incidence at 96 weeks because these antibodies generally form over the first 18 months of therapy.

Glatiramer Acetate

Double-dose (40 mg) glatiramer acetate was compared with the standard 20-mg dose by Cohen and colleagues[16] in a randomized, double-blind trial. Of the 229 patients screened, only 90 had 1-15 enhancing MRI lesions at baseline and were randomized to receive 20 or 40 mg of daily subcutaneous glatiramer acetate. The higher dose resulted in a 38% reduction of total enhancing lesions over months 7-9, but this primary endpoint was not statistically significant (P = .09). Seventy-six percent of patients on the 40-mg dose and 52% on the 20-mg dose were relapse-free, which was a significant benefit. There was a trend in favor of the higher dose in the relapse rate; the rate was 0.43 with 40 mg and 0.57 with 20 mg (P = .12). The rates of immediate postinjection reactions were 22.7% with 20 mg and 32.6% with 40 mg. Further study of higher dose glatiramer is being pursued in a phase 3 clinical trial.

Interferon beta-1b

Goodin and colleagues[17] examined the rates of neutralizing antibody-positive titers in 2 cohorts of patients with a poor clinical response to interferon beta-1b therapy and 1 cohort of patients unselected for response to therapy. This analysis of 6698 patients was conducted to gain an understanding of the clinical impact of these antibodies. Out of the 1998 patients in the North American cohort, 94% had neutralizing antibody testing for disease worsening. Sixty-seven percent had disease progression for at least 6 months, and 34% had at least 3 exacerbations that required steroids and/or hospitalizations per year. Of interest, only 21.3% of patients in the North American cohort were neutralizing antibody-positive with a mean duration of interferon treatment of 3.32 years. Compulsory testing was performed in the Australian cohort of 2271 patients regardless of their clinical response. If neutralizing antibody-positive status was a principal cause for worsening disease, the incidence of positive neutralizing antibodies would be expected to be lower in the Australian cohort with routine testing than in the North American cohort with testing for worsening disease. However, in the Australian cohort, 37% of patients had at least 20 neutralizing units/mL of neutralizing antibodies. Therefore, these results suggest that antibody positivity does not appear to be the major etiology for worsening MS.

Natalizumab

O'Connor and colleagues[18] presented the pivotal trial extension results after natalizumab dosing was suspended. The annualized relapse rate for 1866 patients increased monthly after treatment cessation and peaked at 0.64 at 7 months. Data from 341 patients who had MRI results greater than 60 days after natalizumab discontinuation also experienced a rise in enhancing lesions over 6 months. No new cases of progressive multifocal leukoencephalopathy were reported.

Mitoxantrone

Le Page and colleagues[19] presented the long-term safety data for mitoxantrone in a French cohort of 802 patients. All patients had at least 5 years of follow-up. One patient developed acute congestive heart failure. Thirty-nine patients (4.9%) developed an asymptomatic reduction of their left ventricular ejection fraction below 50%, but it was only transitory in 26 patients. Two patients (0.25%) developed therapy-related acute myeloblastic leukemia 20 and 22 months after the initiation of treatment. One of the 2 patients died regardless of receiving specific chemotherapy. Persistent amenorrhea occurred in 5.4% of women less than 35 and in 31% of women 35 and older. With up to 15 years of follow-up, 51 patients had died but only the leukemia patient's death was considered treatment-related. Thirty-three patients' deaths were considered complications of severe MS.

Therapeutic Development in Experimental Models

IL-17

IL-17, a proinflammatory cytokine, can be blocked with a monoclonal antibody. Smith and colleagues[20] tested the hypothesis that IL-17 was responsible for driving relapses in the spontaneous chronic-relapsing experimental allergic encephalomyelitis model in the mouse, with an antimouse IL-17 monoclonal immunoglobulin antibody. Ten milligrams per kilogram of anti-IL-17 antibody were administered weekly subcutaneously during remission. The anti-IL-17 antibody significantly reduced the relapse incidence and the inhibited neurologic deficit formation. Treatment with the antibody prior to the acute phase delayed disease, but failed to reduce the clinical score. Because IL-17 may be playing an important role in driving relapses, anti-IL-17 therapies may prove to be effective treatment options for relapsing-remitting disease.

c-Jun N-terminal Kinase Inhibition

The c-Jun N-terminal kinase (JNK) pathway, which can be induced in activated T cells, affects gene expression, cellular survival, and cellular proliferation in response to cytokines. These events are associated with the pathogenesis of autoimmune diseases, such as MS. Ferrandi and colleagues[21] investigated the potential role of the JNK pathway in MS. The JNK2 isoform was upregulated in peripheral blood mononuclear cells of patients with relapsing-remitting disease. In vitro administration of a JNK inhibitor resulted in a significant reduction in cell proliferation with triggering of T-cell apoptosis and c-Jun dephosphorylation. The JNK inhibitor, given in daily oral doses, reduced the severity of pathology and delayed the onset of disease in experimental allergic encephalomyelitis. These results support the hypothesis that the inhibition of the JNK pathway could have a role in the treatment of relapsing-remitting MS.

Tyrosine Kinase Inhibition

C-1311 (Symadex), a tyrosine kinase inhibitor, disrupts trafficking of autoreactive cells and concomitant angiogenic processes. Karlik and Ajami[22] presented results showing that treatment initiated in the chronic phase of guinea pig experimental allergic encephalomyelitis showed reversal of clinical and pathologic signs. Treatment with C-1311 was associated with remyelination and modulation of vascular changes.

Arundic Acid

Arundic acid (ONO-2506) is a compound that modulates the function of astrocytes. Studies are examining its use in stroke, Parkinson's disease, and Alzheimer's disease. Arundic acid may enhance the uptake of the neurotransmitter glutamate by activation of astrocytic glutamate transporter receptors in ischemia models. With less extracellular glutamate, neurons are more protected from glutamate influx and cell death. Arundic acid was studied by Takizawa and colleagues[23] in chronic progressive and relapsing-remitting experimental allergic encephalomyelitis. Treatment resulted in milder neurologic symptoms and fewer demyelinating lesions in the brain and spinal cord.

Sphingosine-1-phosphate Receptors and Extracellular Receptor Regulated Kinase Phosphorylation

FTY-720 (fingolimod) also may modulate astrocyte function, which could be beneficial in MS. FTY-720 can activate subtypes 1 and 3 of sphingosine-1-phosphate (S1P) receptors on astrocytes. Osinde and Dev[24] determined which receptor subtype is involved in extracellular receptor regulated kinase (ERK) phosphorylation in astrocytes. Activation of these receptors was measured with downstream signaling via adenylyl cyclase, phospholipase C, and ERK. The study authors found that the S1P receptor subtype-1 mediates ERK phosphorylation in astrocytes. Potential astrocytic functions that are beneficial in MS are those that promote neuronal survival and remyelination and strengthen the contact sites between endothelial cells at the blood-brain barrier.

2006-11-22T05:52:00.000-08:00

ECTRIMS 2006 - New Advances in Clinical Trial Design [MedScape for Med Students}
Advances in clinical trial design and in the treatment of multiple sclerosis (MS) were presented during the 22nd Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), September 27-30, 2006, in Madrid, Spain. The highlights of new findings are reviewed, and implications for clinical practice are discussed.

Clinical Trial Design

Is it ethical to continue to have placebo arms in MS treatment clinical trials? Because therapies exist for relapsing-remitting and secondary progressive MS, randomizing patients to placebo for 2 years has become more controversial. The placebo arm has been critical in measuring the placebo effect. Relapse rates of the placebo group can be reduced by 30% to 50% as patients transition from prestudy to the active placebo phase. Without information of patients on placebo, treatment effects would be overestimated.[1]

Options to avoid a placebo trial include designs that employ add-on therapy, an external placebo group, and an active comparator. The Safety and Efficacy of Natalizumab in Combination with Avonex (interferon beta-1a) (SENTINEL) trial is an example of add-on therapy because natalizumab was added to interferon beta-1a intramuscularly in half of the trial patients. With an external placebo group, such as the Sylvia Lawry data set, all patients can also be on active treatment in a clinical trial. However, historical control groups can have very different outcomes with the same inclusion criteria. For example, patients in different secondary progressive trials of interferon beta-1b had very different disease progression results, although patients were selected with the same inclusion criteria. Active comparator trials are another option in which one treatment is compared with an existing treatment.[2] For example, the Betaferon Efficacy Yielding Outcomes of a New Dose (BEYOND) trial compares 2 doses of interferon beta-1b with glatiramer.

Criteria to ethically perform placebo trials in MS patients must start with informed consent, including the option of being randomized to not receive treatment. Patients should not have tolerated, failed, or refused current treatments. The trial design should be of short duration and have surrogate markers. Rules for patients to drop out of the trial for worsening disease should be clearly delineated. Equipoise is paramount in which the investigator is uncertain of the outcomes before placing patients on placebo.[1]

An important outcomes measure of the pivotal phase 3 MS trials has been confirmed progression of disability. Patients are considered to have confirmed progression with a documented Extended Disability Status Scale (EDSS) increase of greater than 1.0 point on 2 examinations 3-6 months apart. Butzkueven and colleagues[3] assessed whether the trial definition of "confirmed disability progression" equates with "long-term sustained" EDSS progression with the prospectively acquired global MSBase dataset. In their analysis of 4043 relapsing-remitting and secondary progressive patients from 33 contributing MS clinics, 981 had confirmed progression of disability on neurologic exams at least 3 months apart. After 2 years of confirmed disability progression in relapsing-remitting disease, 25% of patients' EDSS scores returned to baseline. After 5 years, 50% of relapsing-remitting patients with confirmed progression returned to baseline level of disability. Fifteen percent of patients with secondary progressive disease returned to baseline level of disability.

Early evaluation of new treatments frequently relies on MRI endpoints. Many trials, such as the 20-mg vs 40-mg glatiramer acetate phase 2 trial, have screened patients for enhancing lesions to assist in determining efficacy with fewer patients. Zhao and colleagues[4] examined the short-term changes in monthly gadolinium-enhancing lesion activity in patients with different initial activity levels. In the 65 placebo patients studied, 49% had no enhancing lesions at baseline. Of this group, 75% developed new lesions over 9 months. All patients with enhancing lesions at baseline had at least 2 more enhancing lesions over 9 months with monthly MRI scans.

2006-11-22T05:46:00.000-08:00

Can The Weather Make You Sick?
"WE TALK ABOUT FLU SEASON, SPRING FEVER, WINTER DOLDRUMS, SUMMER COLDS....WE'RE TOO HOT, TOO COLD, TOO HUMID (AND SOMETIMES IN OCTOBER...THE WEATHER IS JUST RIGHT). BUT FOR SOME, THE WEATHER IS PART OF THEIR ILLNESS. METEOROLOGIST JERE HOUGH INTRODUCES YOU TO PEOPLE WHO ALWAYS WATCH THE FORECAST WITH SPECIAL INTEREST.

Laurie Setterstrom was diagnosed with Multiple Sclerosis about ten years ago...and like others with MS, hot weather is the enemy.

She laughs,?"I need to be moving to Alaska...that's where I need to be."

The problem is so pronounced that all kinds of devices have been developed for MS sufferers to help them keep cool.

A battery-powered cooler collar that cools the blood as it passes through the neck. There are wraps and even a vest that cool by evaporation. She holds up blue vest, "You have to soak it in cold water for ten or fifteen minutes."

Setterstrom has?figured out a way to get an outside chore done...like cleaning her car, "People think I'm crazy but I like to do it late at night."

Ironically, Laurie Setterstrom used to love lying in the hot Gulf Coast sun."

2006-11-22T05:41:00.000-08:00

MCT-125 human trial: MultiCell requests permission for MS trial or fatigue
MultiCell Technologies has said that it will seek authorization to proceed with its phase IIb MCT-125 human trial for fatigue in multiple sclerosis in the UK.

MCT-125 has already completed a phase II clinical trial and demonstrated significant efficacy in reducing chronic fatigue in multiple sclerosis patients. There is no drug specifically approved for the treatment of chronic fatigue in multiple sclerosis patients.MORE

2006-11-22T05:35:00.000-08:00

NEW PATENT: METHOD FOR DIAGNOSING MULTIPLE SCLEROSIS
Abstract Disclosed is a method for diagnosing multiple sclerosis and more
particularly to a method for diagnosing multiple sclerosis by measuring levels
of antibodies to glycans in a biological sample.

2006-11-21T07:44:00.000-08:00

Using water to battle MS, [By COURTNEY KLEMM -- Herald & Review]
DECATUR - Colorful air-filled rubber balls splashed in the water with each attempt to pass them to the next person.

Laughter and constant chatter echoed against the walls of the aquatics area at the Greater Decatur Y as the women gathered in the pool passed the gertie exercise balls to their right, then to their left, then over their heads.

The gertie balls allow muscular stretching that is always beneficial but provides even more health advantages to those with multiple sclerosis.

In the very first YMCA aquatics class geared toward people with multiple sclerosis, class director Barb Entrot leads participants each Tuesday morning through a program designed to help them with health problems associated with MS.

Entrot attended an aquatics training workshop for multiple sclerosis in Chicago to aid in creating a strategy for the class. Each session varies, but all are composed of a warm-up, stretching, range-of-motion exercises, such as shoulder raises and wrist rolls, and a cardio or endurance portion, usually including jumping jacks and leg lifts in the pool. Resistant floats and the side of the pool provide means to work each muscle.

"We try to cover all of the body parts," Entrot said. "It helps with their balance and well-being and helps them to accomplish movement."

And after five weeks in the class, the participants said they have noticed a difference in both their bodies and the emotional well-being they receive from the support and light conversation that consumes each session.

"I just want to be in the best health that I can, to get fit and feel healthier as much as I can," said Sue Durham. "It's given me the motivation to keep moving at home and has helped with the pain I have with my hip on the right side. You have to keep your muscles limber and stretch. You need to do it every day, whether here or at home."

Each day is different when it comes to the pain associated with multiple sclerosis, so Entrot makes sure to check on her participants.

"Sometimes they might have a hard time getting dressed, and other days, no problem at all," she said. "I have to watch them closely, and I'm always asking if they're OK."

With the water in the pool kept at a pleasant 83 degrees, the class participants are able to comfortably work their muscles and joints.

"I find myself looking forward to coming to the Y and getting in the water," said Carla Andrick, who attends the class with her mother, Virginia Wilhelm, whom she calls the "lucky one" to drive her, since Andrick is no longer able. "Water exercise is the best thing for MS. Everything you can't do on land, you can do in the water."

Water aerobics allows people with multiple sclerosis to move various parts of their body they wouldn't normally be able to while being easier on their joints, Entrot said.

Carolyn Mack said she has always turned to exercise to improve the health effects of multiple sclerosis and wanted to attend the aquatics program to continue working out and be a source of encouragement to others.

"I do regular aerobics three times a week, and I wanted to do this to motivate other people to do it," she said.

As each class comes to an end, Entrot leads the participants in a cool down, with stretching to relieve any muscle tension from the session. In balletlike moves, the members of the group raise their arms, and with their hands over their heads, they clap a round of applause for the step toward better health they have taken in a fight against the disease that plagues their bodies.
MORE -- Herald & Review]

2006-11-21T07:24:00.000-08:00

Stada to abandon Interferon-beta project for multiple sclerosis - Forbes.com
FRANKFURT (AFX) - Stada Arzneimittel AG said it is no longer to pursue its Interferon-beta project to treat multiple sclerosis, as limited marketing opportunities did not justify completion of the project.

The company said that the project, which was launched in 2001, did not have a completion date or a potential peak sales figure.

The move is part of the company's reorganisation of its Biosimilar projects.

Stada announced that it is now focusing on its Epo-zeta and Filgrastim projects.

The company is to transfer development, manufacturing and distribution rights for Epo-zeta for the US and Canada to US-based competitor Hospira.MORE - Forbes.com

2006-11-21T07:18:00.000-08:00

Adult Stem Cells Give Hope for Healing - FOXNews.com - MORE
Stem cell research is a much debated and controversial topic in modern medicine. However, the controversy around embryonic stem cells has also sparked an interest in a less ethically risky option: using stem cells taken from adults to treat various diseases.

To understand the amazing impact stem cell use can have for modern medicine you should first understand what a stem cell is.

At first, all life comes from a single cell. Humans grow from just one fertilized egg into a tremendously complex organism. Each organ has its own specialized cells that "know" how to carry out their own special functions. A stem cell, however, is like that very first cell we all originally come from: it is able to become any cell we need it to be.

In fact, the fertilized egg is basically our very first stem cell; from it, we develop all the other cell types found within the human body. Adults still have stem cells in their tissues as they grow and adult stem cells have been collected from bone marrow for many years. They are different from embryonic stem cells because they have passed a certain point of "no return,"meaning they cannot develop into an organ; however the possibilities are still tremendous as they can become different cell types.

Adult stem cells can be found in the umbilical cord blood and placenta when babies are born, and can be saved or "banked" to offer new parents a certain peace of mind. Although stem cells from cord blood are the child's "own," and therefore can be transplanted without the risk of rejection, there is a limit to the number of cells that can be acquired.

"It can save a child's life if certain blood disorders develop in the early years, but there may not be enough cells to treat an older child," Dr. Guerra continued. "Adult stem cells could hold the key to life-long health by facilitating treatment of devastating diseases and as a result increasing longevity."

Banked adult stem cells can be used at a future date to treat a wide array of diseases, such as heart disease, osteoporosis, arthritis, and many other diseases. Because these are a person's own cells, there is no concern about finding a matched donor.

"A great benefit to using one's own adult stem cells is the fact that you do not have to worry about rejection of cells since your own cells are used for your treatment," noted Neostem's CEO and Chairman Dr. Robin Smith, M.D., M.B.A.

To place this in perspective, consider that less than 20 percent of patients who need a bone marrow transplant actually find a match in time to treat their disease.

There are currently over 160 clinical trials using autologous stem cells. New studies describing the clinical benefits of adult stem cells in the treatment of diseases are being published almost daily. Countless research teams around the world are trying to study the possibility of using adult stem cells to grow skin, improve muscle, build cartilage, and regenerate the vital cells of a failing organ.

In addition, growing interest in regenerative medicine is also driving the demand for convenient stem cell banking methods. The results so far are definitely promising.

-- The Journal of American Medical Association reported a study where 50 percent of patients with Lupus (SLE) treated with stem cells were disease-free five years after treatment.

-- The Journal of Rheumatology showed that 73 percent of individuals with rheumatoid arthritis were able to be controlled on medication after being treated with stem cells.

-- The journal Nature even reported the use of adult stem cells to repair vision of blind mice.

We will likely continue to see more results of clinical trials using adult stem cells to address other diseases such as diabetes, wound healing and multiple sclerosis, to name a few. If these techniques are successful, we would have much less need for donor organs; we would improve conditions that previously decreased someone's lifespan or quality of life, such as diabetes, blindness, Parkinson's, Alzheimer's; multiple sclerosis could be cured.

According to Dr. Guerra, clinical trials are already under way in the cardiovascular department:

"As far as treatments go, great advances are being made in improving cardiac status of those individuals with end-stage heart disease and repairing the damaged tissue of those having heart attacks," Dr. Guerra said. "Additionally, you do not have the potential issue of tumor formation which has been seen with embryonic cells," he added.

Now adults have the option to collect and save their own stem cells through a non-invasive and safe procedure, a bio-insurance for future use, and one that may just save your life.

Dr. Manny Alvarez is the managing editor of health news at Foxnews.com, and is a regular medical contributor on the FOX News Channel. He is chairman of the Department of Obstetrics and Gynecology and Reproductive Science at Hackensack University Medical Center in New Jersey. Additionally, Alvarez is Adjunct Professor of Obstetrics and Gynecology at New York University School of Medicine in New York City.

Adult Stem Cells Give Hope for Healing - FOXNews.com - MORE

2006-11-21T07:07:00.000-08:00

REGIONAL RESULTS OF MS STUDY TO BE RELEASED PAW PAW - In response to people's concern about a perceived high number of multiple sclerosis cases in small Illinois communities, a study has been completed.

Its findings comparing local incidence of the disease to that nationwide will be presented at 7 p.m. Dec. 5 at the Community Building on Main Street.

Health Systems Research of the University of Illinois College of Medicine at Rockford submitted a grant to study the prevalence of the disease in the towns of DePue, Lewistown, Morrison, Paw Paw and Savanna.

Presentations will be held in each of the five study communities.

The grant was received in October 2002 from the Agency for Toxic Substances and Disease Registry, which is a division of the Centers for Disease Control and Prevention.

Five areas in the nation were funded to study MS and ALS (Lou Gehrig's disease).

Health Systems Research sought to find all individuals with MS and ALS who had lived in the ZIP code areas of the five targeted communities from 1998 to 2002.

Study subjects then completed information on their medical, residential and occupational history and gave permission for their medical records to be reviewed to verify the diagnosis.

For more information, contact Joel Cowen, principal investigator, at (800) 854-4461 or joelc@uic.edu.

2006-11-21T06:49:00.000-08:00

house accommodates MS [Daily Nebraskan]
Five years ago, when Cecilia Rossiter was diagnosed with multiple sclerosis, a disease of the central nervous system that affects mobility, vision and muscles, she knew she needed a new beginning away from the big city anonymity and extreme housing costs.

So Rossiter, a professional cellist originally from Omaha then living in Washington, D. C., decided to return to Nebraska and was attracted by the tight-nit university community in Lincoln.

But she struggled to find a house that accommodated her disabilities until she heard about a collaborative program between the University of Nebraska-Lincoln College of Architecture and NeighborWorks Lincoln, a group that promotes homeownership, which brought her dream house to life.

Mark Hoistad, the director of the UNL architecture program, said the collaborative effort allowed graduate architecture students to design the house, provide the construction documents and frame the building while NeighborWorks hired a contractor to finish the construction of the house.

The project was designed in the fall of 2004 by a final proposal out of a class of 15 students with construction not finalized until the summer of 2005.

Hoistad, who taught the design class that produced the house's final design, said the house was designed to conform to American with Disabilities Act standards to make it accessible to anyone with a mobility disability.

After living in the house for a few months, Rossiter said she appreciates the house's built-in features, such as a ramp in the garage and three-foot-wide doors, because she is beginning to have mobility problems.

Those with disabilities often feel trapped in buildings that aren't accessible, she said.

Hoistad said other features of the house were a garden lot that cut into the frame of the house and a glass corridor area that used passive solar energy.

"The corridor allows sun in the winter and shade in the summer," Hoistad said.

The corridor's cinderblock wall absorbed heat in the summer and keeps heat from the basement inside during the winter, Rossiter said.

She also said the energy-efficient corridor served another purpose.

"It's lovely in an unintended way," Rossiter said. "I have low vision. The bank of windows makes me feel much happier with sunlight coming in."MORE: UNL-designed house accommodates MS

2006-11-20T08:20:00.000-08:00

"Drug combo fuels hope for MS: Patients in small study showed shocking reversal of symptoms" - MSNBC.com
LONDON - Four years ago, 28-year-old multiple sclerosis patient Karen Ayres was wheelchair-bound and paralyzed. "I was trapped in a body that wouldn't do anything," she says. Now, following an experimental drug treatment, she has regained mobility and is studying for a doctoral degree.

Ayres was one of 27 patients with aggressive MS who was treated in an open trial with a course of cancer-drug mitoxantrone and copaxone, which is used to treat relapsing MS.

Like Ayres, many of the other patients in the study experienced results so remarkable that some MS experts, while expressing caution, are now taking a second look at the preliminary experiment.

A three-year controlled study is being launched at 10 centers across the United Kingdom to further investigate the potential of the drug combination. The results of the initial trial, led by Dr. Mike Boggild at the Walton Centre in Liverpool, will be published next month in the Journal of Neurology.

Mitoxantrone is an anti-cancer drug so powerful that it is potentially toxic and can only be used safely in the short term. So, Boggild and his colleagues combined its use with copaxone — a notoriously slow-acting drug.

"We decided to overlap the treatments because we wanted to give some time to copaxone to build up its effect," says Boggild.

What happened next was dramatic. "Patients who were just the worst of the worst did remarkably well," Boggild said.

"We think we've tapped into an unexpected synergy between the two drugs that gives you more than the sum of the parts," he says. With a few exceptions, Boggild says most of the patients treated with the drug combination are now essentially "trouble-free."

Though one patient developed acute leukemia — a known side effect to mitoxantrone treatment — Boggild says the majority of patients haven't had disease relapses.MORE: "Drug combo fuels hope for MS: Patients in small study showed shocking reversal of symptoms" - MSNBC.com

2006-11-20T08:06:00.001-08:00

"Multiple sclerosis a complex, but common, problem" [Scranton Times-Tribune 11/20/2006] : "Judging by my e-mail inquiries, it%u2019s fairly safe to say that most readers of this column either directly or indirectly know someone who has multiple sclerosis.

MS has been a part of my life — as a physical therapist, friend and relative of some incredible people and their families affected by this disease.

According to the National Multiple Sclerosis Society, MS affects about 400,000 people in the United States and is second only to trauma as the most common cause of neurological disability for those in early to middle adulthood.

MS is almost three times as common in women, and it’s very uncommon before adolescence or after 50. But the risk increases from the teen years until 50.

Multiple sclerosis is considered an autoimmune disease. The body’s immune system does not work properly; it fails to attack foreign substances such as bacteria. Instead, the system allows the body to attack normal tissues and create diseases such as MS, rheumatoid arthritis and lupus.

In MS, the immune system attacks the brain and spinal cord of the central nervous system. Each nerve has an outer covering of a fatty material — myelin — for insulation to improve the transmission and conductivity of impulses or messages to and from the brain. Damage to the myelin interrupts the ability of messages to travel through the spinal cord and to other areas of the body, such as the muscles in the arms and legs.

Due to this “short circuiting,” the brain becomes unable to send or receive messages. In MS, scar tissue or plaque (sclerosis) replaces the fatty myelin in “multiple” areas. This is also called demyelination.

Symptoms: The symptoms associated with MS vary greatly. The amount, frequency and speed of the demyelination process are directly related to the loss of strength and function in daily activities.MORE:

2006-11-20T08:06:00.000-08:00

2006-11-20T07:58:00.000-08:00

Type 1 Diabetes Ups MS Risk [MORE: Physician's Weekly Article-November 20, 2006 Vol. XXIII, No. 44]
People with type 1 diabetes appear to be three times more likely than others to develop multiple sclerosis (MS), according to a study published in the July 2006 Archives of Neurology. A group of researchers assessed the link between type 1 diabetes and MS by looking at two population-based disease registers: the Danish Hospital Discharge Register and the Danish Multiple Sclerosis Register. The study revealed that first-degree relatives of patients with MS had a 63% increased risk of developing type 1 diabetes. The authors concluded that their study “demonstrates an intra-individual and, to a lesser degree, an intra-familial co-occurrence of multiple sclerosis and type 1 diabetes.

2006-11-20T07:41:00.000-08:00

Repair and Protection: National MS Society' "Targeted Research: and Protection Initiative"

What if we could actually reverse the damage that MS causes, restoring function to those who have been living with the disease for years? Recent scientific advances in many different fields are now, for the first time, coming together to bring the dream of protecting and repairing brain tissue and restoring function within our grasp. The Society now targets this vital quest with a program that could dramatically impact future disease management, improve the lives of the estimated two million people worldwide living with MS, and could ultimately lead to a cure.

A specially convened National MS Society Task Force determined that the best way to accelerate nerve tissue repair is to bring together the appropriate clinical specialists and basic laboratory scientists to form partnerships to conduct all elements of the study, from basic research to human clinical trials.

Collaborating to make tissue repair and protection a reality

To ensure the speediest results, the task force recommended that the Society fund as many centers as can meet the extensive expectations ofMORE: Repair and Protection: National MS Society' "Targeted Research: and Protection Initiative"

2006-11-20T07:24:00.000-08:00

MCT-125: New drug for the treatment of chronic fatigue in multiple sclerosis patients
MultiCell Technologies, Inc. (OTCBB:MCET), developing first-in-class drugs based on advanced immune system modulation and other proprietary technologies, today announced that it will seek allowance to proceed from the Medicines and Healthcare Products Regulatory Agency (“MHRA”) in the UK for its planned Phase IIb MCT-125 human clinical trial for the treatment of chronic fatigue in multiple sclerosis patients.

MultiCell has scheduled a meeting with the MHRA for December 1, 2006 to present the Company’s clinical development plan for MCT-125. Additionally, the Company will request that the MHRA allow the Company to proceed to enroll patients in a proposed Phase IIb clinical trial to determine the minimum efficacious therapeutic dose for MCT-125.

“We are hopeful MCT-125 will become an important therapy available to the millions of patients suffering from Primary Multiple Sclerosis-related Fatigue (PMSF),” said Dr. Stephen M. Chang, Chief Executive Officer of MultiCell. “The purpose of the proposed Phase IIb dose-ranging trial is to determine the minimum efficacious dose for MCT-125 prior to commencing a pivotal Phase III trial. The initial Phase II trial conducted by Amarin only determined a single efficacious dose, and we need to know a range over which MCT-125 will remain effective,” noted Dr. Chang.

MCT-125 targets fatigue associated with MS, an autoimmune disease in which immune cells attack and destroy the myelin sheath protecting neurons in the brain and spinal cord. About two million people worldwide are afflicted with MS, and approximately 70 percent of them report fatigue as the worst symptom of their disease.

MultiCell’s therapeutic pipeline includes drug candidates some of which are in various advanced stages of human clinical trials. These therapies include:

* MCT-125 for the treatment of chronic fatigue in MS patients. MCT-125 completed a Phase II clinical trial and demonstrated significant efficacy in reducing chronic fatigue in MS patients. There is no drug specifically approved for the treatment of chronic fatigue in MS patients anywhere in the world.
* MCT-175 for the treatment of relapsing-remitting MS. MCT-175, in preclinical development for the treatment of relapsing-remitting MS, targets disease specific autoaggressive T-cells that destroy the myelin sheath of nerve cells. MCT-175 successfully ameliorated the disease in animal models. MORE ON: MCT-125

2006-11-19T13:02:00.000-08:00

Rolling Back the Ravages of MS

What if we could actually reverse the damage that MS causes, restoring function to those who have been living with the disease for years? Recent scientific advances in many different fields are now, for the first time, coming together to bring the dream of protecting and repairing brain tissue and restoring function within our grasp. The Society now targets this vital quest with a program that could dramatically impact future disease management, improve the lives of the estimated two million people worldwide living with MS, and could ultimately lead to a cure.

A specially convened National MS Society Task Force determined that the best way to accelerate nerve tissue repair is to bring together the appropriate clinical specialists and basic laboratory scientists to form partnerships to conduct all elements of the study, from basic research to human clinical trials.

Collaborating to make tissue repair and protection a reality

To ensure the speediest results, the task force recommended that the Society fund as many centers as can meet the extensive expectations of MORE

2006-11-19T07:32:00.000-08:00

Educating Patients for Pharmaceutical Companies [NurseZone]
By Debra Wood, RN, contributor

With physicians pressed for time to teach patients, pharmaceutical companies have stepped up to fill the void, sending expertly trained nurses into medical offices and patients’ homes armed with the knowledge to ease patients’ fears and improve their adherence with treatment plans, which should lead to better outcomes.

“Patients benefit tremendously in learning more about their disease process,” said Rosanne Burson, RN, MSN, CDE, field manager in Detroit for HELP (Hands on Education for Lantus/Apidra Patients), a program administered by Innovex Inc. for sanofi-aventis U.S. LLC. “Many times we are picking up issues where they weren’t using something properly, or they were afraid.”.....

The nurses provide no hands-on care. In the MS LifeLines (www.mslifelines.com) program for Serono Inc. and Pfizer Inc, nurses educate patients about multiple sclerosis, teach them how to self-administer Rebif, an interferon beta 1-a for relapsing forms of MS, and coach them through the injection process. Teaching takes place in the patients’ home and begins with a 1.5-hour to 2-hour session.

“I feel like I’m helping them get over this hurdle, especially the newly diagnosed patients,” said Mary Ann Caron, RN, BSN, MSCN, an MS LifeLines nurse educator in Washington, D.C. “Some patients are more emotional about it.”

The nurses visit when the clinician starts the patient on Rebif, again two months later and at 11 months. In between visits, the nurses communicate with patients by telephone. Patients also can access information through the MS LifeLines nurse-staffed call center.

“In addition to developing and maintaining long-term relationships with my patients with phone calls and visits with my patients, another rewarding aspect of my job is being able to help patients give their own injection,” Caron said. “This is a huge step for patients to undertake as this means that they are able to take control of their disease and, hopefully, take control of their future.”

Caron recently taught a gentleman to self-administer Rebif after he had been returning to the doctor’s office for years, frightened to give it himself. With much encouragement, Caron taught him the skill and now he enjoys greater freedom.

Corrie Westwood, RN, BSN, MSCN, another MS LifeLines nurse, was diagnosed with MS five years ago and completed a National Multiple Sclerosis Society nursing fellowship, after learning she had the disease. The former labor and delivery nurse moved to Arizona from Colorado to work for Innovex in this program. She has no regrets.

“There’s no time limit on it,” said Westwood, explaining what she likes about the job. “We can sit and talk. Usually I go over whatever questions they have, and then I go over the disease process, the treatments and what to expect from that, and managing side effects.”

Westwood believes having MS helps her with most patients. She often tells them and serves as an inspiration that they too may be able to live a full, productive life.

“I understand a little bit more what they are going through,” she said. “Sometimes I am the only person they know who has MS.”

However, she usually refrains from sharing the information with patients who have progressed and are suffering from cognitive or mobility problems.MORE

2006-11-19T02:42:00.000-08:00

Multiple sclerosis: Disproving the myths of disability - Mayo Clinic
Thomas Holtackers, a retired physical therapist who has multiple sclerosis, talks about the challenges and myths surrounding those who live with a disability

As a physical therapy student in the 1970s, Thomas Holtackers learned to help people overcome injuries that interfered with their daily activities. When Holtackers was diagnosed with multiple sclerosis (MS), he supplemented his physical therapy work with insight gained from personal experience. These days, a retired Holtackers actively encourages positive thinking to help people with disabilities meet the challenges of daily life.

A native of New Jersey, Holtackers was active in high school and college sports. After college, Holtackers worked as a physical education teacher and coach. Later career goals led him to enroll in the physical therapy program at Mayo Clinic, Rochester, Minn. Holtackers graduated from the program in 1972 and became a physical therapist in a hospital intensive care unit.

About this time, Holtackers developed the initial symptoms of multiple sclerosis — a disease of the central nervous system that can cause movement or coordination problems, pain or tingling in the limbs, vision problems and fatigue. After his diagnosis, Holtackers transferred to a unit where he could work with patients who also had MS.

Eventually Holtackers found his niche by balancing patient care in a hand therapy center and developing patient education materials. "Working with patients was the reason I became a physical therapist," Holtackers says. "But I also enjoyed developing education materials. Both were mentally challenging, yet physically accommodating."
Emotional toughness and a supportive environment: Tools for getting the job done

Working with a disability can be rewarding, but it's not without challenges — both physical and emotional.

"When you have a progressive condition, it's difficult to face a future of uncertainty," Holtackers says. "It's important to set your own doubts aside while you continually adapt to the changes the disease brings to your life."

Holtackers credits a supportive work environment for his successes on the job.

"Many people with disabilities want to work," Holtackers says. "The technology is out there to offer physical support in many work environments. But support from supervisors, co-workers and the administration is just as important."

For people who are worried about working with a disability, Holtackers says, "Maximize your ability and try to limit your disability. Accommodations are often more mental than physical."
Dispelling myths and changing perceptions

One misperception Holtackers tries to set straight is the belief that people with physical disabilities also have mental disabilities.

"Most people with disabilities can think on their own, make decisions on their own, and function independently mentally and physically — just in a different way," Holtackers says.

Holtackers acknowledges that his years as a physical therapist gave him the opportunity to change people's perceptions and attitudes toward disabilities. But first he had to change his own perception of what he believed others were thinking of him as a person with a disability.

"I ultimately determined that if a person has difficulty with my disability, then it's his or her problem," Holtackers explains. "I won't limit my life based on fear of how others may react to my disability."
The power of positive thinking

Holtackers actively encourages positive thinking.

"Your attitude toward yourself is reflected back to you from those around you," Holtackers says. "Every day, challenge yourself to deal positively with negative circumstances. When you project a positive attitude, those around you tend to become more positive, too." MORE - Mayo Clinic

2006-11-18T19:31:00.000-08:00

Stem cells might cause brain tumors - MSNBC.com
Injecting human embryonic stem cells into the brains of Parkinson’s disease patients may cause tumors to form, U.S. researchers reported Sunday.

Steven Goldman and colleagues at the University of Rochester Medical Center in New York said human stem cells injected into rat brains turned into cells that looked like early tumors.

Writing in the journal Nature Medicine, the researchers said the transplants clearly helped the rats, but some of the cells started growing in a way that could eventually lead to a tumor.

Goldman’s team used human embryonic stem cells. Taken from days-old embryos, these cells can form any kind of cell in the body. This batch had been cultured in substances aimed at making them become brain cells.

Click for related content
Adult stem cells little or no help to heart repair

Previous groups have tried to coax stem cells into becoming dopamine-releasing cells.

Goldman’s team apparently succeeded and transplanted them into the rats with an equivalent of Parkinson’s damage. The animals did get better.

Dividing cells
But the grafted cells started to show areas that no longer consisted of dopamine-releasing neurons, but of dividing cells that had the potential to give rise to tumors.

The researchers killed the animals before they could know for sure, and said any experiments in humans would have to be done very cautiously.

Scientists have long feared that human embryonic stem cells could turn into tumors, because of their pliability.

Opponents of embryonic stem cell research cite such threats. Many opponents, including President Bush and some members of Congress, believe it is immoral to destroy human embryos to obtain their stem cellsMORE - MSNBC.com

2006-11-18T19:22:00.000-08:00

Famous Patients, and the Lessons They Teach: New York Times

By BARRON H. LERNER, M.D.

Brad Barket/Getty Images
MICHAEL J. FOX Like Lance Armstrong, the actor started a foundation to raise money for and awareness of the disease he was facing, Parkinson’s.

Matt Houston/Associated Press
LANCE ARMSTRONG He learned in 1996 that he had testicular cancer. After a complete recovery, he won the Tour de France seven times.

RITA HAYWORTH Ms. Hayworth had acting jobs even while in the early stages of Alzheimer’s. Her doctors just thought she was forgetful.
Readers of the March 29, 2004, issue of The Star, a weekly tabloid devoted to celebrities, learned that the actor Michael J. Fox had experienced a “miracle recovery” from his Parkinson’s disease.

But had he? Evidently not, given Mr. Fox’s recent appearances in political ads, in which his disease seemed quite active.

Mr. Fox is only one of countless celebrity patients now associated with various diseases. What lessons do these cases teach the public? Are we misguided in relying on celebrities when we become sick?

Mr. Fox’s story resembles those of other famous patients. He was a well-known television and movie star when he received a diagnosis of Parkinson’s at the young age of 29. He eventually went public with the diagnosis and started a foundation to educate the public and raise money for scientific research.

Yet as the article in The Star shows, information about Mr. Fox’s condition is subject to distortion. And patients may mistakenly believe that they should simply emulate what sick celebrities do, even imitating treatments that may not be appropriate. As one woman with Parkinson’s, who appeared on “The Oprah Winfrey Show” with Mr. Fox in 2002, said, “I just tried to follow right behind him and step in the footprints.” At times, patients have unwittingly become the symbols of a disease. In 1981, newspapers announced that the actress Rita Hayworth had Alzheimer’s. Although the illness was described in 1906 by a German physician, Dr. Alois Alzheimer, by the 1980s it had been largely forgotten. Ms. Hayworth had been extremely forgetful as far back as the early 1970s, and her doctors mistakenly believed they were witnessing the effects of lifelong alcoholism.

Ms. Hayworth’s agent continued to get her acting jobs, like an appearance on “The Carol Burnett Show” in 1971. What was most remarkable about this performance — which included a charming duet, “Mutual Admiration Society,” sung with her host — was that even in hindsight, it is impossible to tell that Ms. Hayworth had any problems at all. She was being fed her lines off stage, but she never let on.

As a result, Americans learned an important lesson about Alzheimer’s when Ms. Hayworth’s diagnosis became known: people in the early stages of the disease exist in a variable zone, in which they can alternately seem normal or utterly confused.

Ms. Hayworth’s daughter, Princess Yasmin Aga Khan, agreed to let her mother’s image be used to publicize Alzheimer’s. Once again, a famous face became a way to raise millions of dollars.

Some people have become famous patients reluctantly. In the late 1980s, Elizabeth Glaser, the wife of the actor Paul Michael Glaser, developed AIDS from blood transfusions she had received after giving birth to her elder child, Ariel. Ariel was infected with H.I.V. through breast milk; her brother, Jake, was infected in utero, before Ms. Glaser knew her condition.

Ms. Glaser quietly began the Pediatric AIDS Foundation, but she did not announce that she had the disease. When a tabloid called the Glasers in 1989 and told them that an article was imminent, they decided to go public. A previously unknown person thus became a celebrity patient.

Ms. Glaser’s defining moment came at the 1992 Democratic National Convention, when she movingly discussed what H.I.V. had done to her family and how the Reagan administration had not devoted enough money to AIDS. Both Elizabeth and Ariel Glaser died from AIDS, but Jake, whose life his mother had vowed to save when she started the foundation, is alive and well at age 21.

Of course, not all celebrities are entirely altruistic. A scandal emerged in 2002 when it became known that some stars were promoting various treatments on talk shows without revealing that they were being paid by drug companies. Another concern is that celebrities have too much say in dictating how Congress allots research money.

Perhaps the most vivid story of a famous patient is that of Lorenzo Odone, who developed a fatal neurological disorder, adrenoleukodystrophy, in 1983 at age 5.

Told by Lorenzo’s doctors there was little to be done, his parents, Augusto and Michaela Odone, began a relentless search for a substance to cure or prevent the disease.

By 1987, they had developed Lorenzo’s oil, a mixture of two cooking oils. The Odones’ story was celebrated in the 1992 movie “Lorenzo’s Oil,” which strongly praised the oil before definitive data became available. Hollywood was criticized for raising false hopes.

But the Odones were ultimately proved correct. While the oil cannot cure the disease, it can prevent its onset in boys predisposed to it. Lorenzo is still alive.

Despite the striking triumphs of the Odones and the cyclist Lance Armstrong, who defeated testicular cancer, the best advice for those who visit the Web sites of famous people to learn about diseases is still caveat emptor. What is true for celebrities may not be true for their fellow patients.MORE: New York Times

2006-11-18T12:25:00.000-08:00

Seroprevalence of herpes simplex virus type 2 in MS

[Acta Neurol Scand. 2006 Dec;114(6):363-7]
Background - It has been proposed that multiple sclerosis (MS) might be a sexually transmitted disorder. There is evidence that seropositivity to herpes simplex virus type 2 (HSV-2) correlates well with the number of sexual partners. Accordingly, a raised overall HSV-2 seroprevalence in MS would lend support to this theory. Materials and methods - Serum from 497 UK subjects with clinically definite MS was tested for antibodies to HSV-2 and compared with matched historical controls from within and outside London, blood donors and genito-urinary medicine (GUM) clinics.

Results - The unadjusted MS seropositivity rate was 14%. HSV-2 seroprevalence in MS patients aged 35-64 years was significantly higher overall compared with a non-London general population in an unadjusted comparison. HSV-2 seroprevalence in London MS patients compared with London blood donors was significantly greater irrespective of age, but the MS seropositive rate was lower than GUM clinic attenders. In a logistic regression analysis, increased age, female sex and MS diagnosis all independently increased the odds of seropositivity after adjustment for each other.

Conclusion - It is concluded that there is increased likelihood of HSV-2 exposure in patients with MS and this may indicate a higher than average number of partners.

2006-11-18T07:06:00.000-08:00

Turbine Creates A Warm Front
A CARING husband has taken an unusual step to look after his wife who suffers from multiple sclerosis - installing a wind turbine at the couple's home.

Derek Matthews, of Bourneheath, installed the turbine on a six-metre pole in his back garden to keep his wife, Anne, warm at all times, particularly during periods of mains electricity failure.

The one kilowatt FuturEnergy turbine is designed to overcome the drawbacks of poor response, low-power output and high cost domestic wind power systems.

Anne found out she had MS 25 years ago and feels extreme pain during the cold weather.

She uses an electric blanket every day of the year, and the turbine, together with a compact battery bank that stores the generated electricity, ensures that power is always available to run the blanket and other essential electrical appliances.

It also considerably reduces the family's daily energy consumption.

Derek, who works as a training manager for energy management company Dalkia, said it will provide extra comfort for his wife.

"The turbine provides peace of mind that even when a power interruption occurs, my wife will always enjoy a pain reduced sleep in a warm bed and house, and it is impossible to put a price on that," he said.MORE

2006-11-18T06:54:00.000-08:00

HometownAnnapolis.com, Top Stories - 40 years later, wheelchair bowlers still rolling
Photo by Kathleen Lange — Volunteer Russell Buhrer, 13, of Severn River Middle School watches as Sharon Engler of Glen Burnie, a member of the Hopeful Wheelers, aims for a strike at AMF Bowling Lanes in Pasadena.

For most people, bowling isn't much of a feat.

Pick up a ball, walk toward the lane, swing your arm and let it go, hoping to hit as many pins as you can.

No problem.

But for Pam Raeke and the other eight members of the Hopeful Wheelers, bowling is anything but easy. Each has multiple sclerosis. Many rely on a wheelchair, while others can't stand for long periods of time. All need some level of help.

For them, bowling goes something like this:

Wheel up to the lane in front of a ramp that looks like a metal chute. Wait for a volunteer to bring you a ball and hoist it onto the top of the ramp, usually a few feet off the floor. Then push the ball down the ramp toward the end.

It's a lot of waiting and it can be hard on volunteers, many of whom are retired.

Despite the difficulties, members of Hopeful Wheelers have a ball.

"I love bowling, I really do," said Mrs. Raeke, who has been involved with the group since 1982.

This year the Hopeful Wheelers are celebrating their 40th anniversary. They were originally funded by the Multiple Sclerosis Society, but the nonprofit group pulled its financial backing a few years ago. Members were given a choice: Take an alternative like yoga, or go their own way.

Now they keep the league going with volunteer help and borrowed transportation. They also pay for lane time at AMF Bowling in Pasadena.

"It gives you a reason to get out of the house and a chance to socialize with other people," said Penny McNameeMORE

2006-11-18T06:48:00.000-08:00

TYSABRI: Natalizumab Alters T Cell Ratio in MS Patients (Reuters Health)
Use of natalizumab in patients with multiple sclerosis (MS) alters the ratio of CD4+ to CD8+ T-cells in cerebrospinal fluid (CSF), researchers have shown.

This may account for the development in some patients of progressive multifocal leukoencephalopathy (PML), a demyelinating disorder of the CNS caused by JC virus infection.

In the October issue of Neurology, Dr. Olaf Stuve of the VA North Texas Health Care System, Dallas and colleagues note that natalizumab (Tysabri) was voluntarily withdrawn from the market and its use was stopped in clinical trials after two patients with MS and one with Crohn's disease developed PML. Subsequently, Tysabri has been made available again.

Natalizumab is a monoclonal antibody against the adhesion molecule, very late activation antigen 4, which is an alpha-4-beta-1 integrin.

The team examined CSF and peripheral blood specimens from MS patients who had undergone natalizumab therapy and found that CSF levels of CD4+ to CD8+ were similar to those seen in HIV patients. Ratios normalized within 6 months of cessation of natalizumab therapy.

The ratios in peripheral blood progressively decreased with the number of natalizumab doses but remained within normal levels.

The researchers suggest that lower expression of unbound alpha4 integrin on CD4+ T cells may be a mechanism underlying the altered T-cell ratios.

"Although the mechanism remains undefined at present, the implications for immune control of CNS infections are potentially important," the researchers say, "and suggest that prolonged, uninterrupted natalizumab therapy may eventually alter systemic immune responses."

In an accompanying editorial, Drs. Henry F. McFarland and Steven Jacobsen of the National Institutes of Health, Bethesda, Maryland note that "careful biological monitoring" will be required as patients return to treatment with natalizumab.

The results, they conclude, "have implications for not only natalizumab but also other therapies that have similar mechanisms."

Arch Neurol 2006;63:1383-1387

2006-11-18T06:41:00.000-08:00

Diseases show healthy geographical disparity
By Jo Ann LeQuang-Correspondent
Published November 19, 2006

Epidemiology is the study of where diseases occur and how they spread.

For example, there is an AIDS epidemic right now in Africa. In some areas of Africa, as much as 25 percent of the population is infected.

But sometimes diseases have unique geographical patterns that defy normal disease distribution. Understanding these geographical distinctions can provide valuable clues about the disease itself.

One such pattern is the “stroke belt,” an 11-state area in the southeastern United States. People who live in these states are at 50 percent greater risk for stroke than other Americans. Not only is there a higher incidence of stroke, there is a 10 percent higher death rate from stroke.

The 11 states just miss Texas. They are Alabama, Arkansas, Georgia, Indiana, Kentucky, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee and Virginia.

The “buckle” of the stroke belt is an area from the Blue Ridge Mountains to the Atlantic, right around the Carolina coast. Stroke rates are twice as high there as for the rest of the stroke belt.

Why does the stroke belt exist? There are many theories, but no real answers. Some researchers point to smoking rates, a high-fat diet and the fact that there is more high blood pressure here than other parts of the country.

Others wonder if there is not some environmental factor that exposes residents of these states to a higher risk of stroke.

Breast cancer is another disease with some odd “hot spots.” Residents of Cape Cod have twice the incidence of breast cancer than residents of other parts of Massachusetts. When this first came to light, other “hot spots” were pointed out: Long Island, N.Y., Marin County, Calif., Puget Sound, Wash., and Brownsville all have much higher incidences of breast cancer than the surrounding areas.

One of the most intriguing geographical puzzles for disease is multiple sclerosis. The lowest incidence of MS occurs at or near the equator, where the disease affects roughly 1 in 100,000 people. The farther away from the equator you move, the higher the incidence of the disease.

In the northern part of the United States, the incidence of MS is 30 to 80 in 100,000. The same applies for Europe and other parts of the world.

What’s more, with MS, your risk changes if you move before you’re 15 years old. A Northerner who moves closer to the equator before age 15 has the same risks as a person born near the equator. Postpone that move until after age 15, and you can’t alter the risk even if you move to a place exactly on the equator.

Another geographical riddle is schizophrenia, a neurological disorder that affects cognitive function. The incidence of schizophrenia is higher in large urban areas (populations more than 1 million) than in smaller towns. The geography does not seem to matter as much as the environment: big cities have proportionally more schizophrenics.

What’s more, if a schizophrenic parent has a child, that child is twice as likely to develop schizophrenia if raised in a big city than a small town

2006-11-18T06:32:00.000-08:00

Research Promises New Treatment for MS - There are a lot of new things in Krystal Hexamer's life.
By: Crystal Britt

CAPE GIRARDEAU, Mo. - Medical breakthroughs on the horizon could soon make life a lot easier for those living with Multiple Sclerosis. Right now about 400,000 Americans have Multiple Sclerosis and more than 750 have MS in southeast Missouri alone. As of now, the cause remains unknown, and there is no cure. But, new research gives people living with the disease a new found hope.

There are a lot of new things in Krystal Hexamer's life. She's a new teacher, loving every minute of her job at Deer Creek Christian Academy in Cape Girardeau. She talks about her students often, and the career that motivates her everyday. But, what you'll rarely hear her speak of is the inner battle she fights. Regular doctors appointments are now quite common for Krystal. It all started last May. "It felt like my arm was asleep for about four days, and I thought it would be too long", said Hexamer. Several tests, and two months later...she found out she has Multiple Sclerosis.

,,,certain things like heat trigger relapses. "I have to stay away from hot water, hot tubs, hot showers. Hair dryers I can't use. My last relapse happened from hot water in one of those mall automatic sinks", said Hexamer.

People with MS only have one way to control the disease...through injections. Krystal dreads the time, three days a week when she has to inject herself with medicine...medicine that won't cure her, but hopefully keeps her from getting sicker. That's where exciting new research comes in.

Doctor Harold Moses, Jr. treats patients like Krystal at Vanderbilt University Medical Center in Nashville, Tennessee. "I would predict, in five years we'll probably have 4-5 new treatments for MS. Some of those are going to be oral", said Dr. Moses. Krystal says, "To get away from the needles...just having a pill you could take would be great."MORE
By: Crystal Britt

2006-11-17T07:38:00.000-08:00

BioMS Medical announces Professor Hans-Peter Hartung as National Coordinator in Germany for phase II/III trial of its lead drug, MBP8298, a proprietary synthetic peptide for the treatment of multiple sclerosis: MORE ON MBP8298

2006-11-17T07:20:00.001-08:00

New Wave Of HOPE - Support Group Aims To Aid MS Patients
Many people don't even know they have it, others live for years experiencing only mild symptoms and it is among the most difficult diseases to diagnose.

There are many people who suffer from Multiple Sclerosis, or MS, an inflammatory disease of the central nervous system, basically the brain and spinal cord. Those with the disease experience gradual destruction of myelin - which can be described as a sort of impulse-conducting insulation around the nerve fibers - in patches throughout the brain or spinal cord, or sometimes even both, interfering with the nerve pathways and causing muscular weakness, loss of coordination and speech and visual problems. It often occurs in young adults and it's believed that it could possibly be genetic.

People in the local area who suffer from MS are no longer alone. A Wave of HOPE, which stands for "Help Open People's Eyes" to MS, is a new support network in Oakdale to help those who may be having a hard time coping with the disease or just need some encouragement.

Karen Basi and Sandy Guerra are two members who helped establish the Wave of HOPE, and are also sufferers of MS. Karen Basi has had MS for six years and Sandy Guerra has suffered from MS since 1999. Understanding the troubles MS sufferers undergo, they decided it was time to make a change.

"If there is one thing I have learned while dealing with MS, it is that there is nothing worse than having your independence taken away from you," Basi explained. "Possibly not being able to walk and having to depend on other things or people can be devastating. So our goal with the Wave of HOPE is not to pay for medicine or to give pity, but to help reduce daily challenges."

Although there is a national MS society that does great things for people with MS and helps in more ways than one, Basi and Guerra said they also wanted to offer a local group that was more personal and accessible.

"The MS Society is great. It's just that when you are already feeling down and are having trouble, the last thing anyone wants to do is deal with mountains of paperwork," Guerra said of receiving assistance through the national organization.

These extraordinary women, along with many other people, recently came together and hosted a golf tournament to help raise funds for people with MS. Randy Basi, Karen's husband, also played a big role in helping with the fundraiser....MORE

2006-11-16T07:52:00.000-08:00

"Vanderbilt University Movies shed new light on how nerves are wrapped"

Much like the electrical wiring in your house, the nerves in your body need to be completely covered by a layer of insulation to work properly

Instead of red, white or black plastic, however, the wiring in the nervous system is protected by layers of an insulating protein called myelin. These layers increase the speed that nerve impulses travel throughout the brain and the body. The critical role they play is dramatically illustrated by the symptoms of multiple sclerosis, which is caused by lesions that destroy myelin. These include: blindness, muscle weakness and paralysis, loss of coordination, stuttering, pain and burning sensations, impotence, memory loss, depression and dementia.

The formation of myelin sheaths during development requires a complex choreography generally considered to be one of nature's most spectacular examples of the interaction between different kinds of cells.

Now, a group of Vanderbilt researchers has successfully produced movies that provide the first direct view of the initial stage of this process: the period when the cells that ultimately produce the myelin sheathing spread throughout the developing nervous system. The results were published online in the journal Nature Neuroscience on Nov. 12 and should aid in the design of new therapies to promote the repair of this protective layer following disease or injury.

"We discovered that this process is far more dynamic than anyone had dreamed," says Bruce Appel, the associate professor of biological sciences and Kennedy Center investigator who headed up the study.

In the central nervous system, the myelin membranes are produced by cells called oligodendrocytes. These cells must be distributed uniformly along axons — the long, wire-like extensions from neurons that carry nerve impulses — so that the membranes, which wrap the nerve fibers like millions of microscopic pieces of electrician's tape, can cover the axons completely and uniformly. The wrapping process takes place near the end of fetal development and actually continues for some time after birth.

In order to study this process, Appel and his research group — graduate students Brandon Kirby and Jimann Shin along with post doctoral fellows Norio Takada and Andrew Latimer — created a transgenic zebrafish which incorporates fluorescent proteins in the cells involved in myelination. The zebrafish is a small tropical fish that has become a popular species for studying the process of development in vertebrates (animals with backbones). Because zebrafish embryos are transparent and develop within a few days, they allow biologists to watch developmental processes as they take place: something they cannot do with mice or other mammals. These characteristics allowed the Vanderbilt researchers to obtain images of the cells involved in myelination using a confocal microscope and edit them into time-lapse movies.

The oligodendrocytes that produce the myelin membranes arise from mobile, dividing cells called "oligodentrocyte progenitor cells" or OPCs. OPCs are made in special locations in the brain and spinal cord. These cells seek out axons and spread out along them. Then, at a certain point, a fraction of the OPCs transform themselves into oligodentrocytes and begin wrapping axons. Each of these cells can wrap portions of several different axons and each axon is wrapped by a large number of oligodentrocytes....

"This could serve as a surveillance mechanism that allows the OPCs to determine the presence or absence of nearby cells of the same type," says Appel, "and could explain how they distribute themselves along the axons."

The researchers used the same system to see how the OPCs respond to injuries and conditions like multiple sclerosis. They did so by using a laser to destroy the OPCs along a short length of the embryo's spine a day before the axon-wrapping stage begins. They found that the OPCs in the vicinity of the gap start dividing to produce additional cells that move into the gap. After a day, the number of OPCs in the gap had grown to 50 percent of normal and after four days it had risen to 70 percent.

"Now that we have a better understanding of OPC and oligodendrocyte behaviors, we are in a much better position to identify and study the genes that are necessary for myelination," says Appel, "and having these genes in hand should aid in the design of drugs to promote remyelination following disease or injury."CLICK HERE TO READ FULL ARTICLE:

Source: Vanderbilt University

2006-11-16T06:58:00.000-08:00

MS patients being sought for study ; Tuls a News
People ages 18 to 65 who have been diagnosed with multiple sclerosis are invited to participate in University of Tulsa re-search into how the disease affects people's ability to consent to medical research.

That is important to know because pharmaceutical companies use MS patients to test potentially risky drugs that could be used to treat or cure the disease, a TU press release states.

People who agree to participate in psychology professor Michael Basso's study will attend one three-hour testing session on the TU campus or at a convenient location; they will be paid $125, plus mileage if they come from outside Tulsa; and they will receive money for lunch, according to the press release.

People without MS also are needed for a comparison group.

To sign up, call Basso at 631-5472, e-mail him at michael-basso@utulsa.edu, or go online to www.orgs.utulsa.edu/cre.

2006-11-15T03:20:00.000-08:00

Study confirms increased MS rates in two counties
"The recently released findings of a new study appear to confirm long-held suspicions that local communities Morrison and Paw Paw have higher-than-average rates of multiple sclerosis - particularly among women.

The study found Morrison in particular had 21 confirmed cases of MS - all of them women - which represents about 218 cases for every 100,000 people. That's about 2 1/2 times the average diagnosis rate, which is about 85 diagnoses for every 100,000 people, according to a national survey.

Studies typically have found about two or three women are diagnosed with MS for every man with the disease, but in the communities studied locally, the rate was much higher - 11 women diagnosed for every man.

"It boils down to about one out of every 300 women in the areas that we studied (have multiple sclerosis)," said Joel Cowen, principal investigator at Health Systems Research of the University of Illinois College of Medicine at Rockford. "The key message I think is the Morrison area is predisposed (to MS). It has this big female excess. That is a really high level, probably highest in any of the known literature."

The study was able to verify three cases of MS for Paw Paw, representing more than 2 1/2 times the average rate because of Paw Paw's small population. Lewiston also had a higher rate, but Savanna and DePue were not elevated, the study found.

Although the study confirmed long held rumors of high rates of MS for Morrison, Paw Paw and Lewistown, the researchers could not find any environmental factors to explain why the numbers were elevated, Cowen said.

"We really don't have an answer to say why it is so high," Cowen said. "We can really just say it is so high and that women with a northern European background in northern Illinois should be on the lookout for this."

That particular ancestry appears to be a factor in all the communities studied. Of the 37 individuals diagnosed with multiple sclerosis, all 37 had a northern European background, Cowen said. Morrison is know to have strong Dutch and German roots.

"I think women need to be aware in this area that being of northern European ancestry is a risk factor," Cowen said.

Genetics are also thought to play a part in the disease. Eleven of the study participants had a blood relative with MS. Because small towns "may have many related persons," genetic predisposition could also be one of the factors for the elevated levels of the disease, the study found.

The results for Morrison mirror a 1993 study also done by the University of Illinois College of Medicine in Rockford at the behest of the Whiteside County Health Department.

In the 1993 study, 23 people said they had multiple sclerosis in the Morrison ZIP code. That study was different because the findings were based on self-designation, meaning the 23 people simply told the researchers they had MS; the diagnosis was not verified medically, Cowen said.

This time around participants agreed to have their medical records reviewed by an expert at Texas Tech University who verified whether participants actually had MS, Cowen said.

Verification is important because MS was once a "disease of exclusion," meaning doctors would sometimes diagnose patients with the disease simply because the patient's symptoms didn't match any other illness. Cowen said Monday that the study identified several people in the five communities who were either misdiagnosed with MS or whose diagnoses couldn't be confirmed.

The researchers in the current study also looked at the background of all the study participants, searching for commonalties in past living locations, jobs or other factors. Cowen said he'd heard local rumors blaming water supplies or industrial pollution for the high rate of MS, but his study found no evidence supporting any particular environmental cause.

The study - one of five conducted in the United States to better understand MS and ALS, also known as Lou Gehrig's Disease - was funded with a grant given in October 2002 by the Agency for Toxic Substances and Disease Registry. Cowen recently sent the completed study's data to the agency, where it will be compiled with the four other studies in hopes of better understanding the disease.

While the results may not have been a breakthrough in discovering an environmental cause or trigger for MS, Cowen said the results were unique in finding a generally high rate in several of the towns, especially among women.

Eventually, Cowen hopes the medical community creates a national database for MS, similar to the current database for cancer victims. That way researchers could better study the disease, Cowen said. He said he'd would also like to sponsor a future conference on MS in Rockford.

2006-11-14T07:16:00.000-08:00

Cannabis and neuroinflammation:therapeutic perspectives in MS...Entrez PubMed

INTRODUCTION. The endocannabinoid system consists of cannabinoid receptors, endogenous ligands and the enzymatic elements involved in their synthesis and breakdown. AIM. To report on currently held knowledge about the functioning of the system as a modulator of the neuroinflammatory processes associated with chronic diseases such as multiple sclerosis.

DEVELOPMENT. Cannabinoids are synthesised and released on demand and their production increases in times of neuroinflammation and neural damage. In this context then, their actions in the microglial cells and in the astrocytes are characterised by a lowered expression of inflammatory mediators and pro-inflammatory cytokines. Furthermore, cannabinoids can play a role as neuroprotectors by means of different types of mechanisms and, in experimental models of multiple sclerosis, they slow down the symptoms, reduce inflammation and can favour remyelination.

CONCLUSIONS. The clinical use of cannabinoids or pharmacological agents that affect the endogenous cannabinoid system during inflammation of the central nervous system and in multiple sclerosis is currently under consideration and subject to debate. Detailed analysis of the results obtained over the past decade has made it possible to establish the existence of several mechanisms of action of cannabinoids in pathologies affecting the central nervous system that are accompanied by chronic inflammation. Likewise, they also clearly show that the cannabinoid system is an interesting proposal as a new therapeutic tool.

2006-11-14T07:08:00.000-08:00

Montel Williams and 'Help Is Here Express' Bus Tour...Help Patients in Need Access Prescription Medicines
KANSAS CITY, Mo., Nov. 13 /PRNewswire/ -- The "Help is Here Express" national bus tour will roll into Kansas City today along with Emmy-winning syndicated talk show host, author and motivational speaker Montel Williams, stopping at the Shops on Blue Parkway to help people who are having trouble affording their prescription medicines. Since January, the bus tour -- sponsored by America's pharmaceutical research companies -- has visited all 50 states and more than 500 cities to raise awareness about patient assistance programs. The "Help is Here Express" is part of the Partnership for Prescription Assistance (PPA), a national effort that has helped more than 3 million patients, including more than 80,000 in Missouri, find programs that provide prescription medicines for free or nearly free.

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The "Help is Here Express" is staffed by trained specialists able to quickly help low-income, uninsured or under-insured patients access more than 475 patient assistance programs, including more than 180 programs offered by pharmaceutical companies. More than 1,300 national, state and local partners, including the Missouri Academy of Family Physicians, the Urban League of Greater Kansas City, and Lupus Foundation in Kansas City, are working with America's pharmaceutical companies to spread the word about the program. When the "Help is Here Express" moves on, patients in need can visit PPA's easy-to-use Web site ( http://www.PPARX.org ) or call the toll-free phone number (1-888-4PPA-NOW) where trained operators field calls in more than 150 languages.

On a national level, the PPA is represented by Emmy-winning syndicated talk show host Montel Williams, named PPA's national spokesman in January 2006. In addition, nationally recognized Telemundo talk show host and author Mayte Prida leads the PPA's Hispanic outreach effort.

"Since January, I've been traveling the country talking about the Partnership for Prescription Assistance -- urging people to make one call that can change their lives and help them afford their prescription medications," said Williams. "And the word is getting out. But our job is not done; and for the millions still in need of assistance, I urge them to pick up the phone, log on to our Web site or visit the big orange PPA bus to see if they may qualify for assistance."

The PPA specialists work with doctors, pharmacists, health care providers and community groups, educating them on the PPA process. Over 2,500 different brand-name and generic prescription medicines are available through participating patient assistance programs. In addition, the PPA provides information on nearly 10,000 free healthcare clinics and has connected more than 45,000 patients with clinics and health care providers in their communities.

"The PPA is a concerted and effective effort to reach those who still need help," said Williams. "And I'm going to do everything I can to get the word out. As a patient who must cope every day with the effects of multiple sclerosis, I understand only too well the importance of having access to the medicine you need."Montel Williams...MORE

2006-11-14T07:01:00.001-08:00

Pathologic laughing and intractable hiccups can occur early in MS : 1684 -- Neurology
Pathologic laughing occurs in approximately 10% of patients with multiple sclerosis (MS), especially when patients have entered the chronic stage. We describe four patients with MS who, at an early stage, developed pathologic laughing associated, in two cases, with intractable hiccups. In two patients, MRI showed an enhanced lesion in the medulla oblongata and the mesencephalon, two regions suspected of being involved in pathologic laughing and intractable hiccups.

2006-11-14T07:01:00.000-08:00

2006-11-14T06:57:00.000-08:00

fMRI study of episodic memory in relapsing-remitting MS: Correlation with T2 lesion volume
Objective: To determine whether memory loss in patients with multiple sclerosis (MS) results from faulty encoding or retrieval, we correlated extent of T2-weighted lesion involvement with brain activation patterns on fMRI scans obtained while patients performed a verbal episodic memory task.

Conclusions: These results extend previous fMRI studies in multiple sclerosis (MS) by demonstrating an association between greater disease burden and increased neural recruitment during episodic memory. In addition, the stronger correlations observed between lesion volume and brain activation during retrieval than encoding would suggest that retrieval processes are more affected by MS-related cerebral pathology.more

2006-11-13T09:07:00.000-08:00

"Research Highlights" from the New York City Chapter of the National Multiple Sclerosis Society

Positive Results for Fampridine
Acorda Therapeutics announced positive results of a Phase 3, controlled clinical trial of Fampridine-SR, an oral drug designed to provide symptomatic relief by compensating for lost nerve conduction. The placebo-controlled study involved 301 patients with all types of multiple sclerosis at 33 sites in the U.S. and Canada. The primary outcome measured was improvement in the time it took to walk 25 feet. According to the company, those on active treatment showed an average increase in walking speed of 25% versus those on inactive placebo.

The company is expected to meet with the FDA to determine next steps.

“If the FDA agrees that Fampridine is safe and effective, it would bring a welcome symptomatic therapy that has potential utility for a large number of people with different types of MS,” said John R. Richert, MD, vice president of research and clinical programs for the National MS Society.

FDA Agrees to Fast Review for Oral Cladribine
Drug maker Serono (Geneva) announced that oral cladribine, now being tested in an international Phase 3 clinical trial, has been designated by the U.S. Food and Drug Administration as a “Fast Track Product.” This designation should expedite its future review by the FDA and, if the pill proves to be safe and effective, speed the day when there is an oral therapy for treating multiple sclerosis.

Cladribine can interfere with the activity of white blood cells that underlie the immune attacks that cause the unpredictable symptoms of MS.

Vitamin B3 Protects Further Nerve Tissue Damage
Researchers report that treatment with nicotinamide, a form of vitamin B3, prevented damaged nerve fibers from degenerating further in a mouse model of MS. Shinjiro Kaneko, MD, and colleagues (Children's Hospital Boston) report their findings in the September 20 issue of the Journal of Neuroscience (2006;26: 9794-9804). This study was partly funded by a research grant from the National MS Society to Zhigang He, PhD, and by the National Institutes of Health.

The immune attack in MS injures myelin, the insulation that speeds nerve impulse conduction between nerve cells. The underlying, wire-like nerve fibers, or axons, are also damaged. Finding treatments to protect axons is crucial – researchers believe that it is this damage that underlies the progression of disability in MS.

Further testing is needed before these findings can be applied to developing a possible therapy for people with MS.

We hope that you are both informed and encouraged by the innovative research projects highlighted in this issue. Breakthrough research is paying off with new treatments and better methods of diagnosis, rehabilitation and symptom management - bringing us closer to ending the devastating effects of MS.

2006-11-13T05:16:00.000-08:00

Pasadena Star-News - Getting tough on pot outlets
Here, near the 10th anniversary of voter-approved medicinal marijuana in California, the going is rough for purveyors in the San Gabriel Valley. The two latest dispensaries opened and quickly shut down due to county permit violations.

"Medical functions belong in a medical facility to protect the public as well as patients," said Tony Bell, spokesman for county Supervisor Michael Antonovich. "We believe these current operators' intention is to circumvent the law. We have to be vigilant, and our office will pursue every legal avenue \."

County code mandates that medicinal marijuana dispensaries possess a business license and conditional-use permit, both required since a moratorium approved unanimously in June 2005 by the Board of Supervisors was lifted in June of this year, officials said.

On Wednesday, Alternative Caregivers of Pasadena closed shop after receiving a violation notice from county officials.

"They were conducting a medical marijuana dispensary without a conditional use permit first being obtained," said Alex Garcia with the county's regional planning department.

A hand-made sign posted on the door Thursday told patrons the dispensary, located in an unobtrusive office building at 3868 E. Colorado Blvd., was closed.

Two blocks away and a day earlier, another outlet called California Compassionate Caregivers, this one at 3682 E. Colorado Blvd., also closed shop.

The owners alerted customers with a similar sign, as well as placing a farewell notice on Weedtracker.com, a Web site dedicated to medical marijuana.

"We put our heart and soul and truly wanted to make a difference, but we failed you," reads the Web posting. "We wanted to serve The City of Hope and its cancer patients. We wanted to help the AIDS center located by us."

Los Angeles County Counsel Rick Weiss said letters were sent to the owners of both properties informing them permits were required.

Weiss said the requirements were set up not to discourage them, but to ensure they operate appropriately.

In Pasadena, a city zoning code amendment permanently banning the dispensaries was approved in September 2005, despite an outcry from advocates, said city spokeswoman Ann Erdman.

"People who advocated for medical marijuana packed the hearing room," she recalled, "but \ decided it should prohibit use in Pasadena because a lot of people try to circumvent laws."

"It's easy to essentially buy a prescription off the Internet," she added, "and there is no requirement at the clinics for patients to show they have glaucoma or whatever legitimate illness they may claim."

But William Dolphin, a spokesman for Safe Access for America, a medicinal marijuana advocacy group, insisted that despite such claims, the 200,000 people considered to be in need of the drug should be able to readily obtain the information and medicine they need.

"\ is the most widely used recreational drug in the world," William Dolphin said. "There hasn't been much of a problem getting it on the black market. We're concerned about people who need to know about it and where to get it."

An exemption from criminal penalties for medical marijuana use created by Proposition 215, or the Compassionate Use Act, approved in November 1996 by 56 percent of voters, lies at the root of the controversy; the issue has arisen statewide and in surrounding communities including Monrovia, Monterey Park and Rowland Heights.

In fact, since the proposition passed, two dozen cities and seven counties - including Los Angeles, Riverside and Santa Barbara - have approved regulations allowing the dispensaries. However, three times as many municipalities have passed moratoriums or banned cannabis clubs outright, according to published reports.

And despite considerable interest in its use for treatment of glaucoma, AIDS-related conditions, neuropathic pain, spasticity associated with multiple sclerosis, and chemotherapy-induced nausea, the FDA has not approved marijuana for medical use in the United States.

Despite federal law, possession and sale of marijuana is carried out in approximately 250 outlets statewide, having proliferated in the last decade.

2006-11-13T05:07:00.000-08:00

Wales - Hopes for no-hassle flu-jabs for MS patients
The move will come as a relief to the O'Donohues, in Tonyrefail, who have struggled to convince their GPs that they should receive the vaccine.

MULTIPLE Sclerosis patients could automatically be offered the seasonal flu jab from next year.

The Welsh Assembly Government is considering expert advice to include people with neurological conditions in the at-risk groups entitled to the free vaccination.

But, at present, most people with MS cannot get a flu jab, unless they have associated respiratory problems.

The Joint Committee on Vaccination and Immunisation, which advises the four UK health departments on immunisation policy has said that a neurological at-risk category should be added to the list of groups offered influenza vaccine from next year.

The move will come as a relief to the O'Donohues, in Tonyrefail, who have struggled to convince their GPs that they should receive the vaccine.

Kevin O'Donohue was initially told that his wife, Janet, who has MS, could not have a flu jab, even though she has had one for the last two years.

The 46-year-old said he had to convince his local GP that his wife was entitled, after she was initially denied it on the grounds she is not in one of the at-risk groups.

The flu jab is currently offered free to everyone over 65 and those with a number of chronic conditions, such as asthma.

Mr O'Donohue, a production operator, said, "If my wife was to catch a bad case of flu this winter, the consequences could be dire."

2006-11-13T04:09:00.000-08:00

Comedian's daughter talks of Pryor experience - baltimoresun.com
Rain Pryor says that when her father, Richard, was diagnosed with multiple sclerosis, the legendary comedian and actor saw the disease as another trial in a life that seemed tormented from birth.

She says he insisted MS stood for "more stuff," then she flashed a wily grin and admitted that "stuff" was a euphemism for a four-letter cuss word her dad was known for using.

Yet for Rain Pryor, it meant more stuff, too. In fact, to read her newly released memoir, Jokes My Father Never Taught Me (Regan, 2006), is to wonder whose soul was tortured more.

The book relives with exceptional detail the violence, turbulence and decadence that came with being the daughter of one of the greatest standup comics of all time, a man whom she says most folks got along with better if they didn't try to get close to him. But it's also about how she overcame resentment and bitterness during the latter years of his life - when MS made him a shell of the man he'd been - and how they grew closer than she ever imagined.

"I wanted to write a love story and about forgiveness and about growth," said Pryor, 37, an accomplished actress who moved to Baltimore from Los Angeles a month ago to be with friends in the area and to get away from the Southern California glitz. Her book tour comes to Security Square Mall's Center Court at 6:30 this evening. "I wanted to be really inspirational ... about this man who was very flawed but he was a dad."

The book tour, which is approaching the anniversary of Richard Pryor's death last Dec. 10, is part of Rain Pryor's steps to branch out in an entertainment career that once consisted mainly of parts in television series and indie films. She's most noted for playing a gifted teenager in the 1980s sitcom Head of the Class and for an episode of Chicago Hope where she starred alongside Richard, whose performance as an MS patient earned him an Emmy nomination.

The daughter of an African-American father and Jewish mother has recently drawn acclaim for her one-woman play, Fried Chicken and Latkes, about growing up in both cultures. The play made two stops in the Baltimore area - at the Hippodrome Theatre and Morgan State University's Murphy Fine Arts Center. Pryor also is popular overseas as a blues and jazz performer who sings Ella Fitzgerald and Sarah Vaughn tunes at clubs in London and Hong Kong.

"She's such a multi-layered actress that's so dynamic in what she brings," said producer Niles Kirchner, who went to high school with Pryor in Beverly Hills, Calif. He is working to bring Pryor's book to the big screen. "She comes with two different sides, a Jewish side and a black side, and when you throw those cultures together, and add the unique experience of living in L.A. and having a showbiz background, she can reach places a lot of actors today can't often find."

Pryor has a down-to-earth, keep-it-real personality. In Baltimore, she says, she has found folks easier to relate to than in Tinsel Town.

"People are real here," she said about Baltimore. "That's why I moved here. People may recognize you, but it's a different kind of recognition. You feel like you're at home. I don't feel like I have to wear makeup or look a certain way or be a certain way. I can just be me."

Being yourself is important when you feel forever linked to your famous father, a man whose offstage behavior drew as much attention as his onstage persona. Indeed, many of the stories Rain Pryor tells about her father are well-documented: born of a prostitute, raised by his grandmother in her brothel. Fathered seven children by five wives. Had run-ins with the law. Abused women. Set himself on fire while free-basing cocaine. Perfected a provocative, obscenity-filled, groundbreaking act that appealed to millions and left him known as a celebrity who, as she put it, "told funny stories that dug for deeper truths."

The Richard Pryor story is so well known - he told much of it in his highly acclaimed 1995 autobiography, Pryor Convictions - that you may wonder what else is left for his daughter to tell.

For starters, her story.

She says her parents were high on drugs and watching rainfall when they named her while she was still in the womb

Her mother, Shelley Bonis, was an aspiring entertainer who put many of her aspirations on hold to help further her husband's career. Their lives together began as bliss but turned violent even before Rain arrived.

He was throwing punches like a boxer - to her head, to her pregnant stomach - and Mom went down hard, Pryor writes about an episode of abuse that was relayed to her as a young child. "I should have left him there and then, but I couldn't bring myself to do it," she told me.

Bonis did leave shortly after Rain was born, and Rain didn't see her father again until she was 4 years old - although she and her mother lived down the street from his mansion. On the day Rain was reacquainted with Richard, Bonis left her behind to spend the night; later that evening Rain was awakened by sounds of her father and a woman having sex.

When she approached them unsuspecting, Richard decided it was time to tell his daughter about the facts of life - in a way that only he could.

From his tone, he could have been telling me a bedtime story, she wrote. The thing is, sex, for my Dad, was pretty much recreational. It was fun, it was a tension reducer, and no - it didn't have anything to do with love.

Bonis' parents raised Rain through the first two years of her life, as Bonis moved to New York to "find herself." She ultimately came for her child and returned to New York, yet her parents' friends implored her to give up Rain for adoption. Bonis became enraged at the thought of walking out on her daughter the way the child's father had. But Bonis wasn't ready to be a parent, either.

There were times when she simply couldn't cope, trapped in a tiny apartment with a tiny, mocha-colored child, and occasionally turned to prescription painkillers to get by. Sometimes they got her through the day. Sometimes not, Pryor wrote.

When they didn't, she tended to explode in Mommie Dearest-type rages, and it was all she could do to keep herself from striking me, or worse, tossing me out the window. As night fell, she would pull herself together to go to work, as a dancer - because Jewish girls don't use the word, stripper - and Miles Davis would come downstairs to babysit. Yes, that Miles Davis.

Being Jewish and African-American, Pryor found herself often unaccepted by both cultures. Some blacks, she said, thought she wasn't black enough. Some Jews, she said, believed there was no way she could be Jewish. Feeling isolated and alone, she tried meditation, Buddhism, past-life regression, most anything to center her soul and solidify her identity. Everything she tried proved only momentarily effective.

On good days, I feel like the world accepts me; on bad days, I feel as if I'm on my own, destined to be an outsider forever.

Her dad once hit her in the face so hard it made her nose bleed, she wrote. When he found out that a man had sexually abused her as a teenager, he chided her for "flaunting her stuff." Her mother blamed her for her failed dreams and unrealized potential.

Before long she became a rebellious child, doing whatever she could to agitate both parents. She abused alcohol and drugs. Twice she attempted suicide. On one of the occasions, she placed a plastic bag over her head, refusing to take it off when her mother implored her to do so.

"I had the unconventional dysfunctional family. There's typical dysfunction, and then there's the Pryors," she says, laughing. "I carried a lot as a child. And at the same time, I have to tell you, I don't want to say blessed, but someone's been looking after me, that I turned out the way that I have and had the ability to go forward the way that I had."

Once, while her father was still in the hospital, she and Bonis - now an astronomer- went to visit. By then, Pryor had already grown close to her father, but she says Bonis still hadn't come around.

Mom looked at me, then at Daddy, then back at me. She may have acted tough, but it was evident that she still had feelings for Daddy. "This is the best thing you and I ever did in our lives," she told him. He looked over at me - I was trying not to cry, but the tears were already spilling down my cheeks - and [he] nodded. "You got that right, Shelley." It was a big turning point for me and my mother, and today we're closer than we've ever been.

"I started the book from his passing, and I started working backward from that," Pryor said. "The purpose was to take you from the beginning moments so you can feel emotionally connected. The point was not to have self-pity and be bitter. You wanted people to watch you go through the growth and be with you on the changes." MORE... baltimoresun.com

2006-11-12T08:37:00.000-08:00

MS Drug company buys corporate rights to two-headed snake
ST. LOUIS (AP) – A Florida pharmaceutical company has agreed to pay $15,000 to use a St. Louis aquarium's two-headed snake in its advertising.

Nutra Pharma plans to use the snake, called We, as its corporate mascot and band icon over the next six months. The company uses snake venom in its research for treating HIV-AIDS, multiple sclerosis and other neurological and muscular diseases.

The World Aquarium in St. Louis says it plans to use the corporate sponsorship money to support conservation and sponsor an environmental concert series, scheduled for next summer in New York.

Aquarium officials acquired the two-headed black rat snake in 1999 and tried to sell it in January for $150,000. There were no bidders.

2006-11-12T08:26:00.000-08:00

{DEPRESSING STORY FROM THE UK} "Please help me to die" The Weston Mercury
"A MULTIPLE sclerosis sufferer is begging for someone to help him end his life after battling with the severely debilitating condition for nearly 20 years.

Every morning Neville Badger wakes up he says he makes the same determined wish - for someone to send him back to sleep for good.

The 45-year-old, of Vale Crescent, Weston, says he has lived a full life and wants to end it while it is still his choice, and is pleading for someone to help him find a way he can be euthanised.

He said: "I just want someone to tell me how to die. Why hang around for it to get worse?

"There will be a time where I won't be able to make decisions any more and I want someone to give me euthanasia while I can still have my say."

Mr Badger has asked everyone he can think of for advice, his doctor, social services, even the Samaritans. He has now turned to a solicitor for help but holds out little hope. Multiple sclerosis is a chronic degenerative disease of the nervous system.

"Everyone says I should go to Holland because it can happen there, but how am I supposed to get there? I don't have access to the internet and I can't find any information," he said.

"I've led a full life. I have had two good marriages and I've travelled to America and Iceland and met some fantastic people.

"I have to smoke cannabis all the time just to stay supple. I don't even like the stuff and I don't believe in it at all but I have to smoke it otherwise my body goes all stiff. It's the only thing that takes the pain away.

"I spend all my time either in bed or on a chair. It's not like I'm depressed, I was diagnosed when I was about 26 and I just want it over with now. It's no life and it's going to get worse.

"So much money is being thrown away caring for me. Social services has spent £12,000 on a bathroom I don't need, there's no point. I've got a £2,000 toilet which is a waste of money.

"I have to keep bothering the neighbours when I need help or fall out of my chair and it's not their job. I've got nothing left to live for."

2006-11-12T08:17:00.000-08:00

UK man in MS stem cell therapy hope
A MAN suffering from multiple sclerosis is set to go to Holland for pioneering treatment despite fears over its safety. Ian Munro, whose wife, Luisa, launched a fundraising campaign last year to raise £12,000 for stem cell therapy in Amsterdam, has decided to go ahead with the controversial treatment.

Mr Munro, 44, of Pirniefield Bank, Leith, has now raised £12,500, boosted by donations from 300 guests at the couple's silver wedding party last week.

Mrs Munro said: "We are looking forward to being able to go to Rotterdam for treatment in January and we hope it will make a huge difference to Ian."

In August, Simon Gillespie of the MS Society warned patients to be wary of "extravagant" claims made by some foreign stem cell therapy clinics.

He said the charity had more than £1 million invested in MS stem-cell research and believed it held great potential, but added: "There is, as yet, no scientific evidence to support a stem cell treatment in humans to repair MS damage."CLICK HERE FORE FOR:UK man in MS stem cell therapy hope

2006-11-12T08:11:00.000-08:00

BNC105: PRESS RELEASE ON NEW DRUG IN PIPLINE
Australian drug discovery company Bionomics Limited today updated shareholders at its Annual General Meeting on the recent progress of its anti-cancer drug BNC105 and drug discovery programs in anxiety and Multiple Sclerosis.

"It is a pleasure to be able to report that we are meeting milestones in our drug discovery programs. We are preparing our lead drug, BNC105, for clinical trials and the new preclinical data is highly encouraging. In addition, we have now identified potential frontrunners for our anxiety and multiple sclerosis programs and filed three new patents," said Dr Deborah Rathjen, CEO of Bionomics.

Bionomics announced new data indicating that its lead anti-cancer compound, BNC105, acts in synergy with the blockbuster anti-cancer therapeutic, Avastin?, in shutting down the blood flow to solid tumours. Avastin is Genentech's anti-cancer therapeutic antibody which has generated in excess of US$ 2 billion in sales since its launch in 2004.

BNC105 is a new type of drug called a Vascular Disruption Agent (VDA) that acts by rapidly shutting down the blood supply to a tumour. It thereby "starves" the tumour of the oxygen and nutrients it needs to survive.

"This new data expands the potential clinical applications of BNC105 and may present new commercial opportunities for Bionomics," said Dr Rathjen. "Bionomics has committed to progress BNC105 into clinical trials following FDA approval."

VDA's such as BNC105 have significant clinical potential in the treatment of cancer, as they may potentially be applied across a very wide variety of cancer types, including colon, lung and breast cancers. The market potential for VDAs has been estimated at approximately US$5 billion annually MORE

2006-11-12T07:57:00.000-08:00

Fighting back Mary Molds and Women Against Multiple Sclerosis Luncheon raises money and awareness
The National Multiple Sclerosis Society Mid-Jersey Chapter will host its Women Against Multiple Sclerosis Luncheon at 11 a.m. Nov. at The Palace at Somerset Park in Somerset.

The event's keynote speaker will be Mary Molds, who has been living with multiple sclerosis for five years. Prior to her diagnosis in 2001, Molds did not know much about MS. After her diagnosis, she used the resources of her local Multiple Sclerosis Society chapter to request literature, attend seminars and listen to Web conferences to learn all she could about the disease.

Since then, Molds has become an advocate for those living with the disease and is an active volunteer for the society.

In 2003, Molds organized an MS Walk team, which, to date, has grown to more than 100 members and has raised more than $30,000 for the Mid-Jersey Chapter.

This year, Molds took her fundraising one step further by participating in the Mid-Jersey Chapter's "Coast the Coast" MS 50-mile Bike Tour.

Next year, she plans to ride 170 miles. Fighting back MORE

2006-11-12T07:55:00.000-08:00

Habitat for Humanity Helps Couple who both have MS
....While Habitat for Humanity Seven Rivers Maine typically builds houses where economy dictates, the pair needed an elusive in-town lot near their doctors' offices, support services and Spindleworks artists cooperative where both work as artists.

Neither drives. Diane, 58, lives with MS, and Earl, 53, has MS and cerebral palsy.

But they also live with friends, known and unknown, who want to see a couple that has shared 20 years of marriage celebrate their goal of home ownership.

Their new house will sit at the end of Stone Street — on a quarter-acre lot MORE AT: The Times Record News

2006-11-12T07:42:00.000-08:00

Tutor with MS views illiteracy as the real handicap - Orlando Sentinel - November 12, 2006
'Rani Merens says that in DeBary she is known as the Scooter Tutor.

The name certainly fits -- Merens, who has multiple sclerosis, drives her motorized scooter to the DeBary Public Library about once a week to tutor Guadalupe Razo, a 32-year-old from Mexico City who is learning to read and write English.

"I believe that a person who can't read in our society is more handicapped than I am," Merens said.

Merens, 51, volunteers through the Volusia Literacy Council. She has been volunteering there for more than two years.

Merens is a dedicated tutor who "knows the meaning of thinking outside the box," said Jonel Persinger, the Literacy Council's west Volusia program director.

A retired preschool teacher, Merens said she has always been an avid reader. She said the most rewarding aspect of volunteering for the Literacy Council is seeing the changes in her students.MORE- Orlando Sentinel

2006-11-11T09:11:00.000-08:00

A LETTER FROM FRANCINE...ONE OF OUR 1,620 MySpace FRIENDS

10 Nov 2006 7:05

Hi Stan... =)

My name is Francine Drilon and I’m a 32 year old kindergarten teacher
In 2003, I was diagnosed with Multiple Sclerosis.

I want to thank you profusely, for allowing me to join this group. I’m from the Philippines and we don’t have a lot of information about MS in my country. Whatever I’ve learned about MS, I’ve gotten from my doctors and the internet. As far as I know, we only have one MS support group. I’ve called them twice, and I was told that this small group meets once a month to socialize. There is no information dissemination of any kind, no networking or actual “support”.

I look forward to reading the blogs and articles even though most, if not all, the (new) medication and therapies (sometimes discussed), are not available here.
My battle with MS started with a sore pain in my wrists. I thought it was because I was spending too much time on the computer. The pain didn’t improve and I was beginning to worry. I thought it was Carpal Tunnel Syndrome. After a few days, I started experiencing the same pain on both feet. I was beginning to limp and that’s when I knew I needed to see a doctor. I went to Saint Luke’s Medical Center. After a few minutes of the usual Q&A with the doctor, she said I needed to see a neurologist. I thought, “What?!?! A neuro?! Isn’t that a brain doctor??! I need a brain doctor for sore wrists and a limp?! What’s going on?!”

I made an appointment with the neuro and saw him the next day. He asked me more questions and gave me a long list of tests I needed to go through. He said he would wait for the results the same afternoon, and then decide whether I needed to be confined. I said to myself, “Ok, let’s do the bloody tests and get this over with!” I was in pain and the pins and needles sensation was beginning to advance towards my legs.

The tests consisted of needle poking and what seemed like electric shock treatment! It was agonizing. I have a high tolerance for pain, but this was almost unbearable. I was OK with the whole idea of having needles injected all over my body, but I couldn’t bear the doctor’s hand on my skin. The slightest touch felt like I was being burned alive. There came a point when they needed to insert needles in my spine, but they hesitated because they knew I would shudder as soon as the doctors touched me. They said they had no choice but to attempt to insert the needle without touching any part of my skin. “Attempt?!” I, of course, dreaded the thought that they would miss and leave me a veggie. Needless to say, I survived that ordeal. The tests were over, but I was still in pain... After half an hour from the last needle poking, the doctor said I couldn’t go home yet. “Oh brother! What now?!?!”

I had to be confined and more tests followed. The pain was up to my chest in a matter of hours. I got progressively worse. My hands and arms... my feet...legs... chest... and neck, all hurt like *#&$@#! I had difficulty breathing. It felt like I had a belt tightly wrapped around my chest. I couldn’t move from the neck down! Several neurologists and neuro-surgeons came to see me. They said I had a demyelinating disease. I asked them to pretend that I was a 5 year old and explain to me what exactly that meant. I was told that the myelin sheaths of my nerves were depleting. ”Hmm... How did that happen?” I had to undergo 3 MRI scans and more tests. I couldn’t walk. I couldn’t write or eat on my own. They said that I was hypersensitive, which explained why I physically ached when people spoke louder than a whisper. I ached when the lights were on. I was sensitive to touch, sight, and sound. “Wow! I had super powers!” If I didn’t experience pain, I could be related to superman!

After being hospitalized, a lot of steroids and a dozen other meds, I was finally released. Now I had to get Physical and Occupational therapy! I had to learn how to walk again. I had to learn how to write, feed myself, button my shirt, comb my hair, and do all the basic everyday functions I took for granted. They said I had to desensitize my nerves. I had to retrain my brain and convince it that all these actions were not harmful... not painful. My therapist would say, “Tell your brain... to tell your arm... to tell your hand ... to move this marble.” There was a moment when I thought, “Didn’t I see this in the movie Lorenzo’s Oil?!?!”

They made me dip my hands in warm paraffin wax, move items from one tray to another, practice with a pen, a spoon, a comb... They even made me dip my hands in a pail full of sand. They hid tiny objects in the sand and then showed me pictures of each object they wanted me to find (using my hands). I must tell you that that was difficult and excruciatingly painful. I cried because of the pain. I cried because I couldn’t believe that looking for a small car in a bucket of sand would be so hard. I felt so useless and helpless.

I had to stop working for six months and focus on getting better. I felt dizzy and weak. I experienced chronic fatigue. I had to sit on a chair in the shower while my mom bathed me. I couldn’t even shampoo my own hair! I needed a wheelchair, so working or going out with friends were totally out of the question. I stayed home, went to the hospital, and went back home. I suffered from insomnia. I couldn’t sleep and I stayed up till six or seven in the morning. I was hurting, frustrated, lonely, bored, angry, and depressed. The doctor told me early on, that there is such a thing as MS depression. They said it is due to the “unpredictability of the disease.“ I thought maybe, compared to cancer, with which we are more familiar with the stages and what to expect, MS is far different. We can be OK today... and then totally helpless tomorrow.

As soon as I started walking on my own, thanks to the steroids, I went back to work. Still feeling the pins and needles, still feeling weak and sore, I was determined to go back to my job and my students. Since there are no visual symptoms of MS, it was difficult to explain to people what I was going through. I was sick of answering the same questions about what was going on with me. I was tired of hearing, “Really? But you don’t look sick.” I wanted to say, “Do I need to lose my hair? Lose an eye? Lose weight? Gain weight? Sever an artery perhaps? ... just so you believe that I’m suffering from a progressive disease?” But I always ended up saying, “Well, what you see and how I feel are two different things.”

I worked from October till March of 2003. I suffered another attack come April, and then I was back in the hospital. Three more MRI scans and a couple of second opinions later, I was diagnosed with Multiple Sclerosis. They found lesions in my spinal cord. The doctors said that I should not take it lightly. “There is no known cure for MS”, he said. “The medication is given to address the symptoms, nothing more.” I took medicine for pain, nausea, insomnia, and even meds for epilepsy. My doctors suggested that I quit my job and consider a change of lifestyle. I needed to avoid stress. And since I live in a tropical country, the heat exacerbated my condition. They told me that I should consider moving to a colder part of the Philippines or another country.

As much as I wanted to give everything up... I could not. I told my doctor I couldn’t quit my job because I had no way of paying his doctor’s fee! I wouldn’t be able to buy my medication or pay for my other bills. “God! I would love to focus on myself for a change... but I can’t do that right now.” I did not have medical insurance, and it seemed as though I could only file for disability benefits with Social Security if I lost my head! We don’t get disability benefits that easily here. As long as you can stand, walk, BREATHE... you don’t get anything! I really had no other options but to teach again .

It is now 2006... And yes, you guessed it, I’m back to work. I teach 2 major subjects and 3 minor ones. At this point, I'm taking neuropathic anti-convulsants and morphine every 4 hours. I also take medication for my nausea and really strong sleeping pills prescribed to patients with Schizophrenia. I could be a stock holder of our local drug store! Hahaha! My neurologist and Pain Management doctor still suggest that I stop teaching and finally move to a colder climate or maybe look into a program for MS patients in the States. The heat weakens me and dealing with the pain and chronic fatigue is difficult. I'm still trying to improve my penmanship, but my walking has greatly improved. Each day can be agonizing. In fact, typing this letter is making my fingers sore. But, it’s nothing I can’t handle. I will not be defeated by this. I refuse to give up on living my life the best way I know how.

My father taught me, that in life, it is essential to make peace with one’s pain. I agree with my dad. I have made peace with the physical and emotional pain MS has given me. After reflecting on my own mortality, I have found many things to smile about each day. I find joy in seeing my friends every single week. I embrace each time they come to visit me for coffee laced with meaningful conversation. I treasure DVD marathons with my mom... and singing with my dad... or receiving little notes from my students. I value my alone time, which is when I can read about Gustav Klimt... watch the moon rise... paint pictures... listen to cello music or India Arie. I look forward to corny television shows and even pathetic ones! I can’t wait to take long baths... wash my hair... and button my shirt (even if it’s painful and tiring)... I get excited when I teach my Reading class. I get even more excited when I start preparing elaborate lessons about Henri Matisse for my Art class! I’m in pain... but I’m alive!

I have basic medical insurance now. Unfortunately, it doesn’t cover any of my medication or major medical exams. It only offers free hospitalization, if and when I need it. It doesn’t even pay for my visits to the doctor. I still have no disability benefits from the government. I still suffer from fatigue everyday, especially when it’s hot. I still feel the pain in my entire body. I get nauseated easily. My vision is getting hazy. My short term memory is starting to fail me. I still have those involuntary twitches which causes my hand to launch my spoon or pen into outer space! I still can’t sleep. It’s three in the morning now. But despite all of these and more, I continue to EMBRACE LIFE. I want to be the best daughter, friend, teacher, girlfriend.......and LOVE LIFE AS MUCH AS I CAN, FOR AS LONG AS I CAN. After all, having this disease is NOT A DEATH SENTENCE... It’s simply LIFE MODIFIED.

Thank you again, for letting me join your group. You have no idea how much you have helped me.

God’s choicest blessings to you... today and always... –Francine @);---

2006-11-11T09:05:00.000-08:00

HOPKINS RESEARCHERS DISCOVER HOW BRAIN PROTEIN MIGHT CONTROL MEMORY: Johns Hopkins University - Department of Neuroscience

Johns Hopkins Medicine
Media Relations and Public Affairs

FOR IMMEDIATE RELEASE

Researchers at Johns Hopkins have figured out how one particular protein contributes to long term memory and helps the brain remember things longer than an hour or two. The findings are reported in two papers in the Nov. 9 issue of Neuron.

The protein, called Arc, has been implicated in memory-linked behaviors ranging from song learning in birds to rodents being aware of 3 D space. In people, Arc may be one culprit behind certain long term memory-based behaviors like drug addiction, the researchers say.

"We think Arc controls how brain cells learn and associate behaviors and remember them over a long period of time," says Paul F. Worley, M.D., professor of neuroscience and neurology at Hopkins and director of both studies. "For example, the person who quits smoking can wean himself from cravings at home, at work or outside. But if you put him in a bar with a drink in his hand, his brain remembers that former association and suddenly the craving returns. These types of long term associations are memories wired in your brain."

Years ago, Worley and his colleagues, studying laboratory rats, found that their brains made lots of Arc protein while the animals were awake and active. In fact, it has been long known that stimulating individual nerve cells-- by an act as simple as exploring new environs, for example--causes the cells to make more Arc protein almost immediately. "Arc is an instant and reliable readout for active cells in the brain," says Worley. But although scientists knew that active cells were making copious amounts of Arc, no one knew exactly what Arc was doing in those cells until now.

To figure out what Arc was doing, the Hopkins team looked for what other proteins Arc "plays" with. Using Arc protein as bait, they went on a molecular fishing expedition in a pond filled with other proteins normally found in the brain and hooked two known to be involved in transporting materials into and out of cells.

"Moving things in and out of cells is critical for normal brain cell function. We were extremely excited that Arc might somehow be involved in this transport because it links transport to memory formation," says Worley. "This brings us one step closer to understanding how the brain saves memories."

According to Worley, memories form when nerve cells connect and "talk" to other nerve cells. It-s thought that the stronger these connections are, the stronger the memory.

Like the childhood game called Telephone, where one person taps her neighbor and whispers a message that is passed on in similar fashion to the next person in line, nerve cells connect and "talk" to each other by relaying messages -- usually by passing small chemicals -- from cell to cell.

When nerve cells connect with each other in the brain, one cell releases chemicals into the space between it and its neighbor. The neighboring cell has protein receptors on its surface that capture the released chemicals. The cell that captures these chemicals then swallows up the receptor chemical complexes, removing the receptors from the cell's surface. The more receptors present, according to Worley, the stronger the connection between the two cells. New receptors constantly replace the swallowed up ones.

The two proteins that came out of the Arc fishing expedition -- known as dynamin and endophilin -- previously were known to be critical for this swallowing action. And, it turns out that Arc controls these two proteins and therefore controls how often cells swallow receptors from their surfaces.

When the researchers altered Arc so that it was unable to bind these two proteins, cells were unable to "swallow" and wound up with more receptors than normal on their surfaces. Adding more Arc to cells caused the opposite to happen; the cells hyperactively swallowed up too many receptors, leaving few at the surface.

Unfortunately, it's possible to over excite a cell to death, says Worley, and if the excitation controls come off, the strength of long term memory is altered.

So what does Arc's control over brain cell receptors mean for our ability to remember where we put the car keys? "We know that animals lacking Arc live only in the here and now. They learn fine in the short term, but tomorrow they will need to relearn everything," says Worley. And in the case of long term memories that are better forgotten, such as that cigarette craving while sitting in a bar, a better understanding of how these memories form promises hope that there might be a way in the future to forget them entirely.

Researchers were supported by grants from the National Institute of Mental Health, the National Institute of Deafness and Other Communication Disorders, the Howard Hughes Medical Institute and the Human Frontier Science Program Organization.

Authors of the two papers are Shoaib Chowdhury, Jason Shepherd, Gavin Rumbaugh, Hiroyuki Okuno, Gregory Lyford, Jing Wu, Richard Huganir and Worley of Hopkins;
Ronald Petralia of National Institute on Deafness and Other Communication Disorders at the National Institutes of Health; and Niels Plath and Dietmar Kuhl of Freie Universitat Berlin in Germany.

MORE AT: Johns Hopkins University - Department of Neuroscience

2006-11-11T07:18:00.000-08:00

Power Wheelchair Industry, Advocates Winning Battle over Payments Cuts by
CMS (Centers for Medicare & Medicaid Services):Kaiser Daily Health Policy Report
November 10, 2006 – The power wheelchair industry, and many advocate groups that joined them, seem to be headed for a significant victory over the rule by the Centers for Medicare & Medicaid Services that was to make a substantial cut in the payments for these devices on November 15. Tara Raeber, advocacy communications specialist at the National Multiple Sclerosis Society's Public Policy Office, said the new policy reported yesterday for Group 3 devices is "a victory for the disability community."

CMS officials on Thursday announced that the agency will reduce proposed cuts to Medicare reimbursement rates for some power wheelchairs and scooters, the AP/Houston Chronicle reports (AP/Houston Chronicle, 11/9).

CMS in October announced that beginning Nov. 15, it would reduce Medicare reimbursements for power wheelchairs by about 35% to help offset a significant increase in program expenditures for the devices in recent years.

Under the proposed policy, Medicare reimbursements for standard power wheelchairs would have decreased from the current rate of as much as $6,130 to about $3,800 (Kaiser Daily Health Policy Report, 10/11).

Manufacturers, suppliers and advocacy groups objected to the original proposal, which they said would force wheelchair makers and suppliers out of business and hamper access for disabled beneficiaries. CMS had said the reductions were necessary to stop fraud and abuse and improve the accuracy of reimbursement rates for power mobility equipment (Carey, CQ HealthBeat, 11/9).

A 2004 CMS study found that Medicare expenditures for the devices increased from $43 million to $1.2 billion in the eight years prior to the study (AP/Houston Chronicle, 11/9). However, CMS officials on Thursday said that they decided to revise the proposed reductions based on newer data "that reflects the full and complete manufacturer applications, test results and attestation."

New Rates
Under the new proposal, Medicare reimbursements for "Group 3" power mobility devices for the severely disabled will be between $1,000 and $1,700 higher than the rates listed in the original proposal.

Reimbursement rates for "Group 2" devices, which include the most commonly provided standard geriatric mobility wheelchairs, will increase to about $301 more than the rate proposed in October, according to CQ HealthBeat (CQ HealthBeat, 11/9).

Sharon Hildebrandt, executive director of the National Coalition for Assistive and Rehab Technology, said suppliers still will face significant reductions. For example, she said, Medicare currently pays $7,137 for one type of wheelchair, but the amount will decrease to $5,173 under the new policy.

"There will still be an access issue," Hildebrandt said. CMS spokesperson Jeff Nelligan said the changes would reduce fraud while ensuring beneficiaries have access to appropriate power mobility devices (AP/Houston Chronicle, 11/9).

Tara Raeber, advocacy communications specialist at the National Multiple Sclerosis Society's Public Policy Office, said the new policy for Group 3 devices is "a victory for the disability community"MORE: Kaiser Daily Health Policy Report

2006-11-11T07:03:00.001-08:00

Cheri Piekarski's job is more to her than just a paycheck...Her job is a labor of love

It keeps her going through her down times. It gives her a chance to be with people. It helps her forget about her problems. And more than anything else, it helps her prove to herself that she is not useless.

"I didn't do it for the money. I did it for those reasons," Piekarski said tearfully, "but I'm afraid it's going to end."

From a table at the Muddy Boot Bar and Grill in Forada, where she has worked for a year, she explained why she has those fears. And she expressed sincere gratitude and pride at being able to call her coworkers her second "family."

Twelve years ago, Piekarski, a lifelong Forada resident, started experiencing tingling in her legs, hands and arms. She also noticed that her cognitive skills weren't what they had been. When the tingling and numbness moved into her chest one day, she knew it was time to visit the doctor.

She was sent to a neurologist, who concluded that she had relapsing/remitting multiple sclerosis (MS), a chronic, disabling disease of the central nervous system that has no cure.

"My first thought was, 'thank God it's not a brain tumor,' " she recalled. "I can deal with this. It's MS, it won't kill you."

When she told her husband, Ed "Bubba," she said to him, "This is what I have. I need to know now if you're going to stay with me. I need to know if I should do this on my own or with help."

Bubba chose the latter, and Piekarki's face lit up as she proudly reported that they have now been married almost 30 years.

"I don't know what I would do without my husband," she added. "Without him, my family, my friends and the good Lord, I wouldn't be doing as well as I'm doing."

At the time of her diagnosis, the symptoms – pain, tingling and numbness in the limbs; poor balance; dizziness; weakness; severe fatigue; and decreased vision – necessitated she quit her job at White Mart in Alexandria.

"I was heartbroken when I had to quit, but I didn't have a choice," Piekarski lamented.

For the next several years, Piekarski stayed home, concerned that she would not be able to handle the physical limitations a job would entail.

"There are times when even doing stuff in the house is too physical," she said.

But depression ensued, so a year ago she decided it was time to re-enter the workforce.

"I felt useless, not good for much," she said, tears once again halting her speech. "I wanted my own little spending money. I needed to be around people."

With the Muddy Boot only one block from her home, Piekarski applied for a job there. The owner, Tom Beaulieu, hired her as a part-time bartender and waitress.

Despite her illness, Piekarski handled the job well and took on as much as she could. A few months ago, a position for a bar manager opened. Having proven to both herself and her work family that she could pull her weight, Piekarski was promoted to the position.

"He [Beaulieu] offered it to me knowing I had this," she said gratefully. "I said, 'but what about my disability?' and he replied by saying, 'what disability?' "

In June, an acquaintance of Piekarski, who also has MS, suggested she nominate Beaulieu for the Employer of the Year Award, given by the National Multiple Sclerosis Society, Minnesota Chapter.

At first unsure if she should because it was such a small company, Piekarski decided it wouldn't hurt to try.

In the nomination, Piekarski wrote an essay explaining how the company goes above and beyond in complying with the Americans with Disabilities Act and how it accommodates the unpredictability of her MS.

In September she heard that her efforts proved successful – Beaulieu was named the Employer of the Year in the state of Minnesota.

Piekarski continues to enjoy her job, and works anywhere from 12 to 25 hours a week, although she admits it's difficult at times.

"There are days I go home and I'm done – emotionally, mentally and physically," she said. "I have flare-ups here and there. So far I've been able to accommodate them, work with them, live with them."

She struggles daily with the fears and frustrations of her disease – worrying about health insurance, if she's getting worse, what she would do without her family, and whether or not she will be able to walk.

And as she poured herself a cup of coffee from behind the bar, she expressed another major concern.

"My biggest worry day to day is that the MS is going to take hold and I won't have this," she said of the job from which she has reaped far more than monetary rewards. "I'm glad God gave me the ability to have the chance to do this."

But despite these fears, she strives to maintain a positive attitude, and gives thanks every day for the things she is able to do and the people who have supported her through sickness and health.

"I go through each day and I try to make everybody's day a little happier," she concluded. "I thank God every day I get out of bed and I can walk, and bless each day I have on my legs."MORE AT: Echo Press

Listen to Dr. Timothy Vollmer's 2 new podcasts on iTunes

2006-11-11T01:57:00.000-08:00

CLICK HERE & LISTEN TO DR. VOLLMER'S 2 PODCASTS:

"EXERCISE & MS: WHY EXERCISE IS IMPORTANT IN TREATING MS"
"EYE PROBLEMS & MS"

Don't have iTunes on your PC or Mac?

I'ts FREE!!....SIMPLY CLICK ON THE "SUBSCRIBE" BUTTON ABOVE TO GET A FREE DOWNLOAD OF iTunes FOR YOUR PC OR MAC!

A NEW DAILY FEATURE: A LETTER OF PERSEVERANCE.....FRANCINE FROM THE PHILLIPINES

2006-11-10T08:20:00.000-08:00

Hi Stan... =)

My name is Francine Drilon and I’m a 32 year old kindergarten teacher In 2003, I was diagnosed with Multiple Sclerosis. I want to thank you profusely, for allowing me to join this group. I’m from the Philippines and we don’t have a lot of information about MS in my country. Whatever I’ve learned about MS, I’ve gotten from my doctors and the internet. As far as I know, we only have one MS support group. I’ve called them twice, and I was told that this small group meets once a month to socialize. There is no information dissemination of any kind, no networking or actual “support”.

I look forward to reading the blogs and articles even though most, if not all, the (new) medication and therapies (sometimes discussed), are not available here.

My battle with MS started with a sore pain in my wrists. I thought it was because I was spending too much time on the computer. The pain didn’t improve and I was beginning to worry. I thought it was Carpal Tunnel Syndrome. After a few days, I started experiencing the same pain on both feet. I was beginning to limp and that’s when I knew I needed to see a doctor. I went to Saint Luke’s Medical Center. After a few minutes of the usual Q&A with the doctor, she said I needed to see a neurologist. I thought, “What?!?! A neuro?! Isn’t that a brain doctor??! I need a brain doctor for sore wrists and a limp?! What’s going on?!” I made an appointment with the neuro and saw him the next day. He asked me more questions and gave me a long list of tests I needed to go through. He said he would wait for the results the same afternoon, and then decide whether I needed to be confined. I said to myself, “Ok, let’s do the bloody tests and get this over with!” I was in pain and the pins and needles sensation was beginning to advance towards my legs.

The tests consisted of needle poking and what seemed like electric shock treatment! It was agonizing. I have a high tolerance for pain, but this was almost unbearable. I was OK with the whole idea of having needles injected all over my body, but I couldn’t bear the doctor’s hand on my skin. The slightest touch felt like I was being burned alive. There came a point when they needed to insert needles in my spine, but they hesitated because they knew I would shudder as soon as the doctors touched me. They said they had no choice but to attempt to insert the needle without touching any part of my skin. “Attempt?!” I, of course, dreaded the thought that they would miss and leave me a veggie. Needless to say, I survived that ordeal. The tests were over, but I was still in pain... After half an hour from the last needle poking, the doctor said I couldn’t go home yet. “Oh brother! What now?!?!” I had to be confined and more tests followed. The pain was up to my chest in a matter of hours. I got progressively worse. My hands and arms... my feet...legs... chest... and neck, all hurt like *#&$@#! I had difficulty breathing. It felt like I had a belt tightly wrapped around my chest. I couldn’t move from the neck down! Several neurologists and neuro-surgeons came to see me. They said I had a demyelinating disease. I asked them to pretend that I was a 5 year old and explain to me what exactly that meant. I was told that the myelin sheaths of my nerves were depleting. ”Hmm... How did that happen?” I had to undergo 3 MRI scans and more tests. I couldn’t walk. I couldn’t write or eat on my own. They said that I was hypersensitive, which explained why I physically ached when people spoke louder than a whisper. I ached when the lights were on. I was sensitive to touch, sight, and sound. “Wow! I had super powers!” If I didn’t experience pain, I could be related to superman!

After being hospitalized, a lot of steroids and a dozen other meds, I was finally released. Now I had to get Physical and Occupational therapy! I had to learn how to walk again. I had to learn how to write, feed myself, button my shirt, comb my hair, and do all the basic everyday functions I took for granted. They said I had to desensitize my nerves. I had to retrain my brain and convince it that all these actions were not harmful... not painful. My therapist would say, “Tell your brain... to tell your arm... to tell your hand ... to move this marble.” There was a moment when I thought, “Didn’t I see this in the movie Lorenzo’s Oil?!?!”

They made me dip my hands in warm paraffin wax, move items from one tray to another, practice with a pen, a spoon, a comb... They even made me dip my hands in a pail full of sand. They hid tiny objects in the sand and then showed me pictures of each object they wanted me to find (using my hands). I must tell you that that was difficult and excruciatingly painful. I cried because of the pain. I cried because I couldn’t believe that looking for a small car in a bucket of sand would be so hard. I felt so useless and helpless.

I had to stop working for six months and focus on getting better. I felt dizzy and weak. I experienced chronic fatigue. I had to sit on a chair in the shower while my mom bathed me. I couldn’t even shampoo my own hair! I needed a wheelchair, so working or going out with friends were totally out of the question. I stayed home, went to the hospital, and went back home. I suffered from insomnia. I couldn’t sleep and I stayed up till six or seven in the morning. I was hurting, frustrated, lonely, bored, angry, and depressed. The doctor told me early on, that there is such a thing as MS depression. They said it is due to the “unpredictability of the disease.“ I thought maybe, compared to cancer, with which we are more familiar with the stages and what to expect, MS is far different. We can be OK today... and then totally helpless tomorrow.

As soon as I started walking on my own, thanks to the steroids, I went back to work. Still feeling the pins and needles, still feeling weak and sore, I was determined to go back to my job and my students. Since there are no visual symptoms of MS, it was difficult to explain to people what I was going through. I was sick of answering the same questions about what was going on with me. I was tired of hearing, “Really? But you don’t look sick.” I wanted to say, “Do I need to lose my hair? Lose an eye? Lose weight? Gain weight? Sever an artery perhaps? ... just so you believe that I’m suffering from a progressive disease?” But I always ended up saying, “Well, what you see and how I feel are two different things.”

I worked from October till March of 2003. I suffered another attack come April, and then I was back in the hospital. Three more MRI scans and a couple of second opinions later, I was diagnosed with Multiple Sclerosis. They found lesions in my spinal cord. The doctors said that I should not take it lightly. “There is no known cure for MS”, he said. “The medication is given to address the symptoms, nothing more.” I took medicine for pain, nausea, insomnia, and even meds for epilepsy. My doctors suggested that I quit my job and consider a change of lifestyle. I needed to avoid stress. And since I live in a tropical country, the heat exacerbated my condition. They told me that I should consider moving to a colder part of the Philippines or another country.

As much as I wanted to give everything up... I could not. I told my doctor I couldn’t quit my job because I had no way of paying his doctor’s fee! I wouldn’t be able to buy my medication or pay for my other bills. “God! I would love to focus on myself for a change... but I can’t do that right now.” I did not have medical insurance, and it seemed as though I could only file for disability benefits with Social Security if I lost my head! We don’t get disability benefits that easily here. As long as you can stand, walk, BREATHE... you don’t get anything! I really had no other options but to teach again .

It is now 2006... And yes, you guessed it, I’m back to work. I teach 2 major subjects and 3 minor ones. At this point, I'm taking neuropathic anti-convulsants and morphine every 4 hours. I also take medication for my nausea and really strong sleeping pills prescribed to patients with Schizophrenia. I could be a stock holder of our local drug store! Hahaha! My neurologist and Pain Management doctor still suggest that I stop teaching and finally move to a colder climate or maybe look into a program for MS patients in the States. The heat weakens me and dealing with the pain and chronic fatigue is difficult. I'm still trying to improve my penmanship, but my walking has greatly improved. Each day can be agonizing. In fact, typing this letter is making my fingers sore. But, it’s nothing I can’t handle. I will not be defeated by this. I refuse to give up on living my life the best way I know how.

My father taught me, that in life, it is essential to make peace with one’s pain. I agree with my dad. I have made peace with the physical and emotional pain MS has given me. After reflecting on my own mortality, I have found many things to smile about each day. I find joy in seeing my friends every single week. I embrace each time they come to visit me for coffee laced with meaningful conversation. I treasure DVD marathons with my mom... and singing with my dad... or receiving little notes from my students. I value my alone time, which is when I can read about Gustav Klimt... watch the moon rise... paint pictures... listen to cello music or India Arie. I look forward to corny television shows and even pathetic ones! I can’t wait to take long baths... wash my hair... and button my shirt (even if it’s painful and tiring)... I get excited when I teach my Reading class. I get even more excited when I start preparing elaborate lessons about Henri Matisse for my Art class! I’m in pain... but I’m alive!

I have basic medical insurance now. Unfortunately, it doesn’t cover any of my medication or major medical exams. It only offers free hospitalization, if and when I need it. It doesn’t even pay for my visits to the doctor. I still have no disability benefits from the government. I still suffer from fatigue everyday, especially when it’s hot. I still feel the pain in my entire body. I get nauseated easily. My vision is getting hazy. My short term memory is starting to fail me. I still have those involuntary twitches which causes my hand to launch my spoon or pen into outer space! I still can’t sleep. It’s three in the morning now. But despite all of these and more, I continue to EMBRACE LIFE. I want to be the best daughter, friend, teacher, girlfriend.......and LOVE LIFE AS MUCH AS I CAN, FOR AS LONG AS I CAN.

After all, having this disease is NOT A DEATH SENTENCE... It’s simply LIFE MODIFIED. Thank you again, for letting me join your MySpace group. You have no idea how much you have helped me.

God’s choicest blessings to you... today and always... – Francine

2006-11-10T07:26:00.000-08:00

DVD REVIEW: MS AND THE WEST WING -"last five episodes, dealing with Bartlet's revelation of multiple sclerosis, is probably the best storyline they ever did."

2006-11-10T07:20:00.000-08:00

How to grow muscle cells in a dish: Journal of Clinical Investigation

Smooth muscle cells (SMCs) are a crucial cellular component of many parts of the body, including blood vessels, the intestines, and the lungs. SMCs in the blood vessels are involved in several causes of heart disease and understanding how SMCs are generated is important for designing therapies for such diseases. It is also knowledge that could be used to engineer tissues in the laboratory, for example new blood vessels for use in bypass surgery.

In a study that appears online on November 9, in advance of publication in the December print issue of the Journal of Clinical Investigation, Catherine Verfaille and colleagues at the University of Minnesota Medical School, Minneapolis, show that SMCs can be generated from multipotent adult progenitor cells (MAPCs) isolated from the bone marrow of rats, mice, pigs, and humans. These cells only generated SMCs if exposed to the soluble factor TGF-beta or TGF-beta and another soluble factor PDGFB. SMC development from MAPCs occurred along the normal pathway of SMC development and the cells that were generated had all the functions of normal SMCs. This study therefore identifies a model system for studying the effects of potential therapeutics on SMC development and SMCs. It also describes a potential source of SMCs for engineering tissues.

TITLE: Cytokine-induced differentiation of multipotent adult progenitor cells into functional smooth muscle cells

2006-11-10T07:14:00.000-08:00

Retired nurse aids disabled husband
Becoming an ardent caregiver was a matter of choice years ago for Elaine Morrison, 62, a retired nurse. Back in 1979. the man she would marry, Neal Morrison, 55, was diagnosed with multiple sclerosis.

Still, the couple married about three years later in 1982.

"I knew that MS is a progressive disease and that there was no cure, but I wanted to spend time with him, and I love taking care of him," said Morrison.

They live in eastern Jefferson County and Neal Morrison is retired as a pipe fitter.

There were times when Morrison thought they had come to the end of the line as far as help was concerned.

But the last time the pain of MS grew worse than Neal Morrison's medications could alleviate, his wife's research identified a device called a Medtronic Pump that is used to administer Liorisol, an anti-convulsive medication that keeps an MS sufferer's legs from drawing up with painful spasms.

The nature of MS is that a patient can be asymptomatic for months and then have a flair up, according to Elaine Morrison.

"So we determined early on that we needed to make the house as accessible as possible so that Neal could take care of himself as much and for as long as possible," she said.

Although Neal Morrison is wheelchair bound today, he takes care of most of his own needs and even teaches aquatic exercise at Baptist East/Milestone Wellness Center one day a week. "But I do a lot of fetching for him because he fatigues very easily these days," Elaine Morrison said.

Deciding to stay home was big step since couple relied on wife's income
"People don't realize the physical and emotional strain of being a caregiver," she said.

In the early days of the marriage, Elaine Morrison continued to work as a full-time nurse but then cut her hours to part time as the need to be available for her husband began to create conflict on the job.

"We tried to schedule his doctor's visits around my working hours but it just didn't work out. I went to part time about two years ago and that helped some, but I finally retired because he can't help out much with housework and also because I wanted to be home to take care of him," Elaine Morrison said.more

2006-11-10T07:06:00.000-08:00

Medicare policy would restrict people's mobility: Daily Chronicle - Opinions

A new, damaging Medicare policy is about to go into effect, largely unnoticed. It will restrict the mobility and independence of people with disabilities in our community, by restricting coverage of power mobility devices.

Many people with multiple sclerosis, spinal injuries, cerebral palsy - even paralyzed veterans - rely on wheelchairs, scooters and other devices to get out of the house, go to work, run errands and simply enjoy life.

The new Medicare restrictions do not take physicians' recommendations for appropriate mobility devices into consideration; instead, they arbitrarily place people with disabilities into lower-quality, more poorly performing mobility devices. The new guidelines do not factor in the effects of disease progression, and it is likely they could result in a person receiving a device that actually exacerbates a person's symptoms. In addition, they significantly reduce reimbursement across all devices, which will severely limit availability even if someone is eligible.

This reverses rehabilitation and limits quality of life - not to mention increasing the burden on caregivers and discouraging manufacturers from providing more-advanced technologies.

When this policy goes into effect on Nov. 15, people with MS and other disabilities in our community will lose their mobility and independence. It's time to move for those who cannot. By calling your local legislators today, you're helping ensure that the people in your community who need power mobility devices will retain their independence.

JACKIE GUTHRIE

Advocacy and outreach manager

National Multiple Sclerosis Society

Greater Illinois Chapter

Chicago

2006-11-10T06:51:00.000-08:00

23 year old's essay wins national contest

: "Writing an essay asking judges to select her father as the Multiple Sclerosis Foundations top caregiver of the year brought back lots of painful memories for Amber Christman, but the tears she shed while writing the essay were long gone Friday night when the Christman family enjoyed the rewards of Ambers labor.Ambers essay beat out 150 others from all across the country, claiming first place in the MS Caregivers Night Out contest. The reward was a $100 gift certificate to the restaurant of the Christmans%u2019 choice.

Amber, a cheerful 23-year-old Conwayite, graduated from Conway High School and attends Coastal Carolina University part time. She was diagnosed four years ago with multiple sclerosis after undergoing an MRI that was scheduled after a routine eye test showed symptoms of a brain tumor.

Learning she had the sometimes-debilitating disease wasn’t the first bone-jarring lick Amber has taken in life.

Her mother Jayne Christman, a first grade teacher at Pee Dee Elementary School, died when Amber was only 13.

“It was the summer right before high school and so that was extremely hard,” she said.

Through every setback that Amber has taken in life, her dad has always been there to support and encourage her. Although his words to his daughter might seem strange to some, Amber always accepts them with a laugh and says they relieve her fears.

“Be tough. Take it like a man!” are his favorite words of encouragement for her.

Her ready response is, “I always do.”

Christman said he doesn’t allow his real feelings to show.

“You got to keep on laughing,” he said, adding that he’s afraid if he even once gives in and feels sorry for Amber, she’ll stretch out in their recliner, pick up the television remote control and never get up again.

Christman said he enjoyed 23 years of the happiest marriage any man ever had before his beloved wife died. Suddenly being thrust into the role of Mr. Mom was a huge blow to him, but his trouble wasn’t over.

His paternal responsibilities mushroomed again when Amber grew tired for no apparent reason. Her once good grades tumbled to C’s and D’s. She continues to be confused at times, has periodic problems with balance and can no longer drive herself to school.

Dave is able to work only 14 or 15 hours a week researching timeshare at the courthouse, fitting it in between trips to three doctors and physical therapy sessions, cooking for the family and driving Amber to and from her CCU classes.

“If I had a real job, I’d get fired,” he said.

Christman said the first 19 months after they learned that Amber had MS were terrible. He spent all that time fighting his way through bureaucracy trying to get his daughter on Social Security disability.

They also had to find the right neurologist for Amber and settle on the proper medication, which took what seemed like an interminable amount of experimentation. For the first two years she battled a headache that never let up."more

2006-11-10T06:39:00.000-08:00

Help fight multiple sclerosis with me - The Bakersfield Voice
You might not know what multiple sclerosis is, but I know from experience. I graduated from Fruitvale Junior High in 1996 and from Centennial High School in 2000 and have been a resident of the Northwest for the past nine years.

I am now 21 and for the past two years have been suffering from the symptoms of MS. MS is a chronic disease of the central nervous system that affects the brain and spinal cord and strikes adults in the prime of life -- from ages 20 to 50. One new case of MS is diagnosed every hour. It comes and goes unpredictably, leaving people to wonder if they will be able to function from day to day. At this time there is no cure for MS, but with everyone's support it's possible.MORE

2006-11-10T06:24:00.000-08:00

Author focuses on hope
By Patricia Bertuccio/ Staff Writer
Thursday, November 9, 2006

ACTON - When Dana Snyder-Grant found out she had multiple sclerosis, it was 1981 and she was 25 years old. Snyder-Grant couldn't understand why the disease came to her when she was supposed to be young, vibrant and happy.

Snyder-Grant's whole life changed. She stopped teaching high school history and went for a degree in social work. As a psychotherapist, Snyder-Grant dedicated her work to those with a chronic illness and disability, learning along the way how to cope with MS and to get the most of out life.

As a columnist, contributor to a national MS magazine and social worker, Snyder-Grant, 50, has written about dealing with the chronic disease and about life lessons she believes apply to anyone. In her recently self-published book, "Just Like Life, Only More So and other Stories of Illness," Snyder-Grant compiled years of her writing works to get the message out about MS and to give people whether with chronic diseases or healthy, stories of hope and courage.

The 12-year Acton resident spoke to The Beacon last week about how her life has changed with MS and what why she decided to publish her own book.

Q: Why did you decide to publish your own book? How many have you sold so far?
A: Part of being a psychotherapist and specializing in chronic illness and disability is helping people cope with their struggles. I felt I wanted to share lessons, stories and experiences. I tried to get a commercial publisher but I don't think I sent [my draft] to enough publishers. I sent it out to maybe 10 or 20. They all said it was well-written but didn't think there was a market for it. I think there is a market out there. I like to think the book is relevant beyond people with illness.

I don't know how many I've sold so far. Book Locker, the self-publisher, listed me on Amazon, but I won't see the sales for another couple of months. The book is also on sale at Willow Books [in North Acton] and they just asked for more copies. I probably sold a couple hundred so far, maybe 300.

Q: What do you think of the finished product? Is it what you expected?
A: I'm very excited about it. I love the way the book looks and the design. It came back the way I wanted it and it was very cool. Self-publishing is not easy. It was a lot of work but I love the outcome.

Q: What's the most important lesson you've learned from having MS?
A: Learning to let go of control and turnover to how my body feels. After 25 years, another big lesson is the importance of friends and family. Connecting with people are most important in life. I think there's scientific evidence about relatedness to other people.
I'm learning to stay within myself and trust my own body's messages and listen to my body. It's hard to be different in this world. We're still not in a world that accepts differences much. When I was 25, I was supposed to be healthy and vigorous and that's not something I was. I was as healthy and vigorous as I could be.

Q: How has your life changed since you were diagnosed?
A: It's a really hard question because all of my adult life, I've had MS. I can't say what life would be like if I didn't have MS. It's like saying what would life be like without your right arm. For whatever reason, I chose to use MS the best I could. If I could use it in some way to help me grow - It was such a shock [when I was diagnosed], especially for me in the first five years. I just felt I had to do something with it that would be positive because I didn't know what MS would do to me. [MORE...Author focuses on hope]

2006-11-09T06:46:00.000-08:00

Improvements in muscle-tendon properties are beneficial to balance in multiple sclerosis.:
"Institute for Biophysical and Clinical Research into Human Movement, Manchester Metropolitan University, Hassall Road, Alsager, Stoke-on-Trent, ST7 2HL, UK. g.pearson@mmu.ac.uk

A 63-year-old male was diagnosed with multiple sclerosis (MS) two years prior to this investigation. We hypothesized that compromised postural balance in MS can be improved by training-induced alterations in muscle-tendon properties. Sixteen weeks of strength and balance training induced an increase in quadriceps and gastrocnemius muscle size, strength, central activation, muscle recruitment and tendon stiffness. Concomitantly, the ability to maintain postural stances was increased in both eyes-open and eyes-closed conditions. We concluded that improvements in muscle-tendon properties were accompanied by improved balance and a general feeling of well-being after training.
PMID: 17086916 [PubMed - in process]"

2006-11-09T06:43:00.000-08:00

Man says tai chi gave him second chance at life...Classes teach relaxing, energizing routine,
breathing techniques
For Gary Paruszkiewicz, a Detroit native diagnosed in 1991 with multiple sclerosis, it all started with a breath. Confined to a wheelchair by 1993 and taking 16 tablets of Valium every day, Paruszkiewicz had to give up his passion as a successful chef because of his sensitivity to heat.

Paruszkiewicz was suicidal and admits he considered buying a one-way ticket back to Michigan from Kankakee, Ill., where he now lives, to see Dr. Jack Kevorkian.

But his wife had a different idea, suggesting instead that he go back to school and take up tai chi.

“The way I saw it, I only had two options,” he said, so he went back to school.

Paruszkiewicz recalls his first day back to school, how his professor walked in the room and said, “nobody in this room is breathing.” The professor shut off the lights, and Paruszkiewicz learned to focus on his breathing and listen to his body, he said.

Paruszkiewicz got a degree in psychology and was inspired to take up tai chi, an art involving slow, fluid movements, each with a variety of meanings and purposes, to energize and relax the body. He adapted the sequence so it could be performed while seated, using it as a form of therapy, and eventually got himself out of the wheelchair.

“Physical therapy built up my muscles, tai chi taught me how to use them without falling down,” he said. Now, Paruszkiewicz travels around teaching his routine, slightly adapted and made easier to remember.

Last week, Paruszkiewicz was invited by C.C. Plus, Dance for Fun and Fitness, to teach a group of 60 seniors and adults with developmental disabilities in Clinton Township. He also trained the staff of C.C. Plus to incorporate the sequence into other classes.

He taught the students a ward-off movement, a sun breath sequence and something he calls “the grand, heavenly massage,” all designed to increase breathing and energy flow in the body. And it’s all done from a chair.

“All you need to do is give yourself permission, and give yourself control,” he told the class. “If you’re feeling aggravated or angry … you can calm yourself. You can make yourself feel better.”MORE

2006-11-09T06:37:00.000-08:00

Pipex is developing oral Trimesta (estriol) for the treatment of relapsed/remitting multiple sclerosis
Pipex is developing oral Trimesta (estriol) for the treatment of relapsed/remitting multiple sclerosis. The drug, which has completed a Phase II study in that indication, is an estrogenic molecule, approved and marketed in Europe and Asia for the treatment of postmenopausal hot flashes for more than 40 years.

"MS patients who become pregnant have high rates of remission in the third trimester," Kanzer said. "Unfortunately, four to six weeks after delivering, they also have very high rates of relapse of their disease." Estriol - produced only during pregnancy - apparently confers immune benefits on the mother as well as the fetus.

Other investigators completed a 22-month Phase IIa trial that showed "very significant" reductions in the number and size of MS lesions, Kanzer said, and a trial by Pipex will start soon. MORE..oral Trimesta (estriol)

2006-11-08T15:02:00.000-08:00

Risk of MS Relapse Elevated During Systemic Infections
Results of a prospective study of patients with relapsing remitting multiple sclerosis point to a significant association between systemic viral and bacterial infections and increased risk of relapse, inflammatory activity on magnetic resonance imaging, and T cell activation.

In a paper Neurology investigators note that published epidemiologic environmental observations point to infection as a possible etiologic factor or trigger in the onset of MS. ]

"Microorganisms induce strong immune responses specific for their own antigens, but microbial infections can also trigger responses against self-antigens, promoting inflammatory responses," they point out.

"Since no single microorganism has been identified as a clear etiologic agent in MS, a more likely explanation for the epidemiologic environmental observations is that infections introduce a proinflammatory bias in immune responsiveness in MS patients that is capable of triggering disease activity and exacerbations."

Dr. Jorge Correale from Raul Carrea Institute for Neurological Research in Buenos Aires, Argentina, and colleagues say their study supports this line of thinking.

The researchers followed 60 MS patients who were instructed to report as soon as they experienced symptoms of an infection. The team found a threefold increase in the rate of MS exacerbations during the "at-risk period" ranging from 2 weeks prior to 5 weeks after the onset of symptoms of infection, compared with time periods outside this window. Any MS attack during the at-risk period was considered temporally related to the infection.

When a narrower at-risk time window was considered around infection (2 weeks prior to 2 weeks after symptom onset), the risk of MS exacerbation was elevated fourfold.

"Viral and bacterial infections were equally associated with exacerbations," Dr. Correale and colleagues note.

The researchers also observed a significant increase in disease activity on MRI among 20 patients who underwent serially imaging studies, as well as increased T cell activation and proinflammatory cytokine concentrations during infection-related MS exacerbations.

Relapses temporally linked to systemic infection caused more severe and sustained deficit than exacerbations with onset outside the at risk window, the researchers also report.

Neurology 2006;67:652-659. [REUTERS/MEDSCAPE]

2006-11-08T09:12:00.000-08:00

Breakthrough finding on the mechanism of myelin formation could have a major impact on the treatment of MS: UNIVERSITY OF SOUTHERN CALIFORNIA PRESS RELEASE
Neurobiologist and his colleagues study the formation of white matter that plays a role in the health of the nervous system.
By Monika Guttman
Coronal section of brain areas affected by multiple sclerosis

A breakthrough finding on the mechanism of myelin formation could have a major impact on the treatment of diseases such as multiple sclerosis and demyelination as a result of spinal cord injuries.

Myelin, the white matter that coats all nerves, allows long-distance communication in the nervous system.

“It plays a vital role in the overall health and function of the nervous system, and its degeneration plays a role in a number of diseases, such as multiple sclerosis, peripheral neuropathies and even in spinal cord injury,” said Jonah Chan, assistant professor of cell and neurobiology at the Keck School of Medicine of USC.

The study appears in the Nov. 3 issue of the journal Science. Chan, who works at the Zilkha Neurogenetic Institute at the Keck School, collaborated on the study with Michel Cayouette and researchers at the Institut de Recherches Cliniques de Montreal in Canada.

At a basic level, the nervous system functions like a collection of wires that transmit electrical signals encoding our thoughts, feelings, and actions.

Just as an electrical wire needs insulation, myelin is wrapped around axons – the wire-like extensions of neurons that make up nerve fibers. The sheath helps to propagate the electrical signal and maximize the efficiency and velocity of these signals in our brain and body.

Diseases and injuries that compromise the integrity of myelin, such as multiple sclerosis or peripheral neuropathies, have dramatic consequences such as paralysis, uncoordinated movements and neuropathic pain.

Chan’s study sheds light on the mechanisms that control how myelin is formed during development of the nerves. The article constitutes an important step forward in understanding the process of myelination and opens the way to new research in this field.

Chan showed that a protein, Par-3, is at the base of the myelination process. This protein becomes localized to one side of the myelin-forming cells, known as Schwann cells, upon contact with the axon that is to be myelinated.

Par-3 acts almost as a molecular scaffold to set-up an “organizing centre,” which brings together key proteins essential for myelination, in particular a receptor for a molecule secreted by the neurons.

The researchers found that when they disrupted this organizing centre, cells could not form myelin normally. Their discovery demonstrates that Schwann cells need to become polarized so that they know which side is in contact with the axon to initiate wrapping and to bring essential molecules to this critical interface.

These studies open the way to new research, Chan said, which should help to identify other components that are recruited at the organizing center set up by Par-3.

In multiple sclerosis, or after injury, Schwann cells can re-myelinate axons of the central nervous system to some degree. Therefore, these experiments bring about the possibility that manipulating the Par-3 pathway might allow for more efficient re-myelination of damaged or diseased nerves.

This work was supported by the National Multiple Sclerosis Society Career Transition Award and the Donald E. and Delia B. Baxter Foundation Award to Jonah Chan, and the Canadian Institute of Health Research to Michel Cayouette.

2006-11-08T08:55:00.000-08:00

MS won't stop me living life
WALKING along the Royal Mile to work one morning Lesley-Anne Johnston was shocked when a boy gave her a stare before announcing to his mum that "that woman" was drunk.

It was the moment that she knew she would finally have to start using the walking sticks she had been given to aid her as her body was increasingly crippled by multiple sclerosis.

Suddenly she realised that the sticks would at least allow people to understand that the cause of her stumbling or slurred speech wasn't a drink problem but a serious neurological disease.

But since she made that difficult decision four years ago, life has become both easier and harder for the 36-year-old.

For while sticks, walking frames, wheelchairs and medication all help her to retain her independence, the pain and fatigue she suffers have forced her to quit her much-loved job as an educational welfare officer.

And she has also taken the heartbreaking decision not to fulfil her dream of having children.

Yet Lesley-Anne and women like her could, researchers believe, hold the key to solving the puzzle of just why MS strikes - bringing hope of a cure.

It has long been known that Scotland has the highest rate of MS in the world, with an estimated 10,500 sufferers.

And new research in Canada suggests that rates there are rising in women rather than men, prompting scientists to speculate that the same may be happening here.

Which is why the MS Society Scotland has just launched a Scottish MS register to create a database of every person with the condition in Scotland in order to try and find out what the genetic or environmental causes might be.

Lesley-Anne is among the thousands who will be asked to support the project by providing details about themselves and their condition to help scientists find better treatments and ultimately prevent MS altogether.

Sitting in her Craigentinny Road home with a stick by her side, Lesley-Anne laughingly describes herself as an "ideal candidate" for MS, saying: "I've had all the triggers which they think can cause MS, from stressful situations [a marriage breakdown in her early 20s] to serious illness - I had glandular fever when I was 16.

"But they don't know exactly what causes it. Everyone wonders why and how MS happens. I think the register is really important.

"I'm not convinced it will have a massive effect on my MS but it could help others."

Shivering involuntarily, something she shrugs off as "just a tremor", she adds: "My uncle and I both have MS and I wonder if my two nephews [aged five years and nine months] might get it too."

But it is not just the fear of passing on the disease that led her to decide against having her own children.

She says: "Personally I feel that I can't have children because it wouldn't be fair to them. Even if I could get over the fact that I wouldn't be able to run and play with them, I would know that eventually they would be looking after me.

"It has been a huge issue for me. All I have ever wanted in life is to get married and have a family and there is no physical reason why I couldn't still have children.

"I was sad making that decision but even though I have met someone since, I haven't changed my mind. I have seen what MS can be like in the later stages, not just with my uncle, who is now in a nursing home, but with a lot of other people too."

The first sign that anything was wrong with Lesley-Anne came in her early 20s when she slipped going into a pub in Dundee and dislocated her back.

Forced to stop work for more than a year and undergo surgery she then went to university to study English, psychology and philosophy. During the course she started to suffer stabbing pains.

By the end of the four years she was only getting two hours' sleep a night and was so exhausted that she had to take taxis to travel the mile from the halls of residence to her lectures.

Although she was in such pain, she was less worried than she might have been because she had been told that she might need another operation. But after moving to Edinburgh she was referred to the pain clinic at the Western General Hospital where an MRI scan revealed that she had MS.

She says: "I remember when the doctor said he was sorry to tell me I had MS, I was so relieved because I didn't have cancer or any terminal disease. I wasn't phased by MS, it was a condition I knew about and could deal with."

After her diagnosis, in 2001, she realised that the poor memory and sight problems she was experiencing were part of the disease.

For the past three years or so she has taken the drug beta interferon, which has cut her relapses from two a year to just two in three years. But it was not enough to save her job, and after quitting just over a year ago she believes she will never work again.

She says: "I was heartbroken. I loved my job and I miss it to this day. But I was missing a lot of time. I might be off for three days, a week or sometimes a month. That's the whole thing with MS, you just don't know how you will be.

"I had no quality of life either. I had to get up at 5am to roll across the floor and do exercises just to get my body ready for work at 8.30am, by which time I already felt like I had done a day's work. When I got home I sometimes didn't have the energy to cook myself dinner so I would go without. I'll never be able to work again because MS is so unpredictable."

She remains unswervingly positive, however, crediting her sense of humour for getting her through the bad days.

For the past year or so she has filled the gap left by her job by volunteering for the MS Society. And earlier this summer she amazed even herself by completing a disability fundraising challenge along the West Highland Way, partly on foot and partly on a special scooter.

"Ridiculous" as it might seem, she says, she is content with her lot. "Obviously I'd like the MS Society to find a cure for the disease, but personally I just want to stay the way I am now," she says. "I've been through so much rubbish in my life with illness, both me and my family.

"So although I've got MS I never really think about it. I am in a really happy place in my life now."

For more information about the register contact Claire Kennett at MS Society Scotland on 0131-335 4073 or via email at claire.kennett@mssocietyscotland.org.uk

2006-11-08T08:21:00.000-08:00

CANNABInor: Pharmos Commences Dosing in Second Phase 2a Study of Cannabinor in Experimentally Induced Pain
SELIN, N.J., Aug. 10 /PRNewswire-FirstCall/ -- Pharmos Corporation (Nasdaq: PARS - News) announced today that it has commenced dosing in a second Phase 2a clinical study of cannabinor (PRS-211,375) for the treatment of pain. The proof-of-concept trial will test for analgesic activity and the safety of cannabinor, a CB2-selective synthetic cannabinoid drug candidate, in healthy subjects experiencing capsaicin-induced pain.

We expect to advance other compounds into the clinic to further strengthen the pipeline from our extensive library of CB2-selective compounds targeting pain, multiple sclerosis and rheumatoid arthritis among other large markets."MORE

2006-11-08T08:14:00.000-08:00

AVONEX(R),Launched in Japan: Genetic Engineering News
Biogen Idec (NASDAQ: BIIB) announced today that AVONEX(R) (Interferon beta-1a), the most prescribed multiple sclerosis (MS) therapy worldwide, is now available in Japan. AVONEX is available in more than 90 countries, and its introduction in Japan extends Biogen Idec's leadership in the treatment of MS to an important and underserved market....MORE

MBP8298: New Drug in the Pipeline...Ryan Giese gave me this message for you:

2006-11-08T07:48:00.000-08:00

Click Here to go to Bioms Medical's Home Page

"Hi Stan,

It was nice talking to you again!

BioMS has one mission: to deliver a safe and effective treatment for MS
patients and we are well on our way.

MBP8298 is based on ground-breaking research and has successfully completed phase I and II clinical trials.

Currently we are in an international phase III trial for secondary
progressive MS in Canada and Europe.

BioMS expects to commence a similar phase III trial in the US in the first half of 2007.

Recently the European Journal of Neurology published data that showed MBP8298 safely delayed disease progression in an HLA-defined subgroup of MS patients for an unprecedented 5 years. It is my hope that all MS patients can potentially benefit from this exciting research.

Please feel free to call me if you need any more information on MBP8298. I will give you any information that we are able to release to the public...immediately...so you can give it to your MS patients and their families"

Ryan Giese
Vice President Corporate Communications
BioMS Medical Corp

2006-11-08T00:17:00.000-08:00

Australia Senate rejects stem cell ban - CNN.com
CANBERRA, Australia (AP) -- Australia's Senate narrowly voted to end the country's four-year ban on cloning human embryos for stem cell research, ruling Tuesday that the potential for medical breakthroughs outweighed moral doubts.

The decision -- a rare conscience vote in a country where lawmakers are expected to follow the party line -- sets the stage for the ban to be lifted entirely. The measure now goes to Australia's House of Representatives, but lawmakers had expected the Senate to pose the biggest hurdle.

The Senate voted 34 to 32 to allow therapeutic cloning, which involves removing the nucleus of an unfertilized human egg and adding DNA to make it grow in a lab dish.

Scientists had been lobbying for lawmakers to relax rules on stem-cell research and allow therapeutic cloning of embryos for medical research. Since Parliament passed Australia's first laws on stem-cell research in 2002, scientists have only been allowed to extract stem cells from spare embryos created for in vitro fertilization.

Sen. Grant Chapman, from the ruling Liberal Party, likened research that would be allowed under the new legislation to human experiments conducted by Nazi Germany.

"Experiments which subject the zygote, or embryo, to any significant risk are the ethical equivalent of the infamous medical experiments that were inflicted on the unwilling and uninformed victims in Nazi death camps," Chapman said.

Scientists hope stem-cell research will eventually lead to treatments or cures for diseases like Parkinson's and Alzheimer's, as well as spinal cord injuries, diabetes and arthritis.

The potential scientific benefits and the U.S. debate about stem-cell research ahead of midterm elections caught Australian media attention last month when Rush Limbaugh, the conservative commentator, accused Michael J. Fox of faking the severity of his Parkinson's disease in a campaign ad for Democrat candidates who support the research. Fox said he was neither acting nor off his medications.

President Bush and others have argued that the promise of stem cells should not be realized at the expense of human life, even in its most nascent stages. In 2001, Bush pledged to limit federally funded embryonic research to the stem-cell lines that had been created by the time, and in August he vetoed a bill that could have multiplied the federal money going into embryonic stem-cell research.

In Australia, Liberal Sen. Alan Ferguson spoke about his daughter's multiple-sclerosis diagnosis 13 years ago, and said therapeutic cloning would give hope to people like her.

"I would never forgive myself if I voted against this bill and did not give medical research that extra possible opportunity to succeed in finding a cure for some of those terrible diseases which are now incurable and which afflict so many of our population," Ferguson said.

Fellow Liberal Sen. Guy Barnett said he would vote against the bill despite suffering type-1 diabetes -- one of the diseases that researchers hope to cure with the technology.

"The promises of cures are false and flimsy hope," Barnett said.

Prime Minister John Howard was part of a Cabinet decision in June that the law should not be changed, but he agreed to allow a rare conscience vote on the issue -- instead of requiring lawmakers to follow the party line -- after government lawmakers threatened to revolt.

Australian Cabinet members, including the prime minister, hold seats in Parliament.

Howard, an ally of Bush who sent 2,000 Australian troops to the Iraq war, said Monday that he was undecided how he would vote when the issue came before the House of Representatives, where he holds a seat.

"On one hand, I want to do everything possible to help relieve suffering and to leave open the hope of cures of terrible, debilitating illnesses," he said. "On the other hand, I do have concerns that this may in some areas be a step too far and I am still weighing the matter."

Two 21 year olds named "Fallon" met on MS News Channel@MySpace

2006-11-07T23:59:00.000-08:00

Hey Stan!

I met another 21 year old named Fallon on your MS News Channel's MySpace Page!

We now talk everyday, so that's awesome to have connected with someone who is basically the same as I.

We are both 21, both have MS and both are named Fallon... ironoic actually, but yet we have been talking and its awesome, we met on your page!

Fallon lives in New york and I live in Arkansas...so very far apart from one another. But we email each other daily, and she has been my inspiration . I am enagaged and will be married October 27, but it is so wonderful that I have met Fallon.

It is rare in Arkansas to meet others who have MS and very rare that they are the same age as myself or around my age. I know in my heart I am not alone in my daily struggles, but yet with someone your age,,,it helps you more than anything!

My fiance george is standing next to me in the photo. He is my best friend and showed me that MS isn't who I am, no matter how i feel, that the disease doesn't distingish my character and who I am.

I stay positive, outgoing, and never question things that i cant control. Thats the best advice I can give to anyone. Stay positive, dont sweat the small stuff and always smile!

I'm 21, have cancer and MS and have a spinal surgery under my belt, but I grew up! I now know what is truely important out of life...and its the best feeling in the world.

What you do is so wonderful for everyone of all ages. I just thank you a million times for what you do. A lot of people ae in the dark on MS as i was at first. You help so many with just a web site. Thank you on behalf of myself and so many others with MS!

*hugs*

Fallon

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2006-11-07T12:13:00.000-08:00

Treatment of neuropsychiatric conditions associated withMS
[Medline Abstract] University of Toronto, Sunnybrook Health Sciences Center
"This article reviews the treatment of behavioral disturbances associated with multiple sclerosis. Pharmacological and psychotherapeutic treatment data, when available, are presented for five discrete conditions: major depression, bipolar affective disorder, anxiety, psychosis, pseudobulbar affect and cognitive dysfunction. Despite the paucity of empirical treatment data that characterizes all of these conditions, with the exception of pseudobulbar affect, the message from open-label trials and anecdotal experience is that therapy is often successful, leading to improvements in quality of life for patients. Thus, all health professionals involved in the care of multiple sclerosis patients should have a good working knowledge of the neurotherapeutics of multiple sclerosis-related behavioral disorders."

2006-11-07T12:07:00.000-08:00

Shiela K. Reyman looks past MS: EastValleyTribune.com
Shiela \ is turning her love of scrapbooking and her desire to help others with multiple sclerosis into a scrapbooking club. The Mesa 37-year-old was diagnosed with MS in 2002.

“Everybody has something to deal with, I just have MS,” said Reyman, who walks with the aid of a cane, or for long distances uses a wheelchair. “It’s part of who I am, but it’s not what I am.”MORE

2006-11-07T11:40:00.000-08:00

NEW BROCHURE: Volunteering for a Clinical Trial
Volunteering for a Clinical Trial: Your Guide to Participating in an Important Research Study

Volunteering for a Clinical Trial is the perfect guide to participating in a research study. This pamphlet is a handy and quick reference for understanding the clinical trial process and what you can expect as a clinical trial volunteer. The brochure is approved by an Institutional Review Board (IRB).
Price: $2.99 (Includes shipping and handling.
Brochure Features:
Designed to fit in your pocket -- only six pages
Easy-to-read and provides basic information a volunteer needs to know
Addresses the following questions:
What is a clinical trial?
Why should I participate in a clinical trial?
What can a volunteer expect?
What happens after the clinical trial?
Perfect For:
Individuals interested in participating or learning more about clinical trials
Healthcare professionals interested in keeping their patients informed about clinical trials and their processes