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February 2005 - MSFYi

"Go within everyday and find your inner strength so that the world will not blow your candle out." ~ KATHERINE DUNHAM

In This Issue:
* MARCH IS MS EDUCATION & AWARENESS MONTH!
* TWO-YEAR DATA BOOSTS CONFIDENCE IN TYSABRI
* GENE LINKED TO MYELIN REPAIR IN BRAIN
* COLLEGE SCHOLARSHIPS FOR HIGH SCHOOL SENIORS
* RESEARCHERS DISCOVER SPECIFIC MARKER FOR MS MIMIC NIH CALLS HALT TO CONFLICT OF INTEREST
* EXPOSURE TO INFANT SIBLINGS AND MS RISK
* NEW BOOKS OFFER FIRST-PERSON ACCOUNTS OF MS
* TAKE THE HYDRO CHALLENGE!
* WHY WOMEN DEVELOP MS MORE OFTEN THAN MEN
MSF News
* 2005 COOLING PROGRAM
* ORDER YOUR COPY OF THE FITNESS PRESCRIPTION
* NEW FACT SHEETS AVAILABLE IN ENGLISH & SPANISH

MARCH IS MS EDUCATION & AWARENESS MONTH!

As you know, March 2005 is designated National MS Education and Awareness Month by the MSF. This year's theme, Multiple Challenges, Multiple Solutions, is devoted to empowering, educating, and inspiring all who are affected by this disease.

Call the MSF and request an MS Awareness Kit, packed with educational tools to help you raise awareness in your community. It's not too late to plan a fundraiser or awareness event! If you need help getting started, call Toni Somma, Community Relations Coordinator, at 954-776-6805, extension 46. She can help you plan everything from a simple dress-down day at the office to a gala event!

All of us at the MSF cordially invite each and every one of you to mark your calendars for our special events! We have created an innovative and inspirational program that addresses your questions and concerns. We have also included a special evening devoted to those in limbo. Visit <http://www.msfocus.org/programs_events/calendar.html> for the complete calendar. Share this schedule of events with your friends, family members, teachers, support groups, and healthcare providers. Help us raise awareness about MS. We can't do it without you!

PLEASE NOTE CORRECTION TO OUR REGIONAL EVENT SCHEDULE:

Saturday, March 5, 2005

MS Family Day at Dave & Buster's

Multiple Challenges, Multiple Solutions

Location: Chicago, IL

Time: 11:00 a.m. - 2:00 p.m.

Speakers: Daniel Wynn, M.D. & Sue Kelly, R.N.

Saturday, March 12, 2005

MS Family Day at Dave & Buster's, White Flint Mall

Multiple Challenges, Multiple Solutions

Location: Bethesda, MD

Time: 11:00 a.m. - 2:00 p.m.

Speaker: Denise Bartlett, RN, MSCN, CRC

We sincerely apologize for any inconvenience caused by this error.

For more information, please call 888-MSFOCUS (673-6287) or visit

http://www.msfocus.org

From the homepage, click on Education/Awareness Month. When the month is over, email us and tell us what you thought of our events and what you've done to raise awareness of MS in your community.

Results are in for the Phase III Tysabri (natalizumab) AFFIRM monotherapy trial and the news is optimistic. The trial achieved its two-year primary endpoint of slowing the progression of disability in people with relapsing forms of MS and led to a 42% reduction in the risk of disability progression as compared to placebo. This study also demonstrated a 67% reduction in the rate of clinical relapses over two years. This data was consistent with the one-year results.

AFFIRM is a two-year, randomized, multi-center, placebo-controlled, double-blind study of 942 patients conducted in 99 sites worldwide. Two-year trial results from the SENTINEL trial are expected to be available mid-year.

Tysabri is administered intravenously every 28 days, either at a hospital, an infusion center, or a physician's office. The wholesale cost of the drug annually is $23, 504. Information about tysabri is available by calling toll-free 1-800-456-2255 or on the web at

http://www.tysabri.com

GENE LINKED TO MYELIN REPAIR IN BRAIN

Scientists from the Centre for Brain Repair and the School of Veterinary Medicine at the University of Cambridge and the Dana-Farber Institute at Harvard University have identified a genetic repair process in the brain that can recoat nerves with myelin that is stripped away in MS.

In a study published in the December 17 issue of the journal Science, researchers report that the gene Olig 1, believed to promote the development of certain brain cells, is essential for the myelin-repairing process in adults with central nervous system diseases like MS.

During MS remissions, randomly damaged nerves in the brain and spinal cord naturally regain their myelin sheath.

Working with tissue from rodents and humans, researchers determined that the Olig 1 gene triggers this remyelination process, at least temporarily.

These findings suggest that the function of Olig 1 is to repair the brain in areas where myelin has been depleted through disease.

Although these findings will not yield direct results in terms of finding a treatment for MS, they do provide new insight and direction on potential myelin repair processes in the future.

"This report is exciting," comments Dr. Ben Thrower, Medical Director of the MS Center at Shepherd. "One of the goals in MS research is to look seriously at repair strategies in the brain and spinal cord. A better understanding of natural remyelination after MS attacks could be crucial to these efforts."

COLLEGE SCHOLARSHIPS FOR HIGH SCHOOL SENIORS

In recognition of the more than nine million parents with disabilities in the U.S. and their families, Through the Looking Glass (TLG), a non-profit organization, is pleased to announce the 2005 College Scholarship Fund specifically for graduating high school seniors who have parents with disabilities.

Scholarships funds are available to graduating high school students who:

Demonstrate academic and personal achievement

Have grown up with at least one parent with a disability

Will be a high school graduate or graduating senior by Summer 2005

Up to four separate $1,000 awards will be given out in Summer 2005. (A new round of awards will be given out in 2006.) These awards are one of several projects of Through the Looking Glass' National Resource Center for Parents with Disabilities, which is funded by the National Institute on Disability Research and Rehabilitation and the U.S. Department of Education.

More information and application forms are available at http://www.lookingglass.org. Forms may also be requested by calling 1-800-644-2666.

Founded in 1982, Through the Looking Glass is a nationally recognized center that has pioneered research, training, and services for families in which a child, parent or grandparent has a disability.

Researchers have discovered a specific antibody in the blood of individuals with a relatively rare disorder called neuromyelitis optica (NMO), also known as Devic's syndrome, which clearly distinguishes it from MS. Until recently, NMO was considered a severe form of MS.

The symptoms of NMO are limited to the optic nerves and spinal cord. Recurrent episodes of inflammation that damage both the myelin and the nerve cells themselves result in severe symptoms, such as blindness and varying degrees of weakness or paralysis in the legs or arms.

Full-blown NMO can be distinguished from MS using a combination of clinical, imaging, and spinal fluid tests, but the initial symptoms are commonly mistaken for MS. Because the treatment protocol for each disease is different, a test that could distinguish these disorders at the onset of symptoms could dramatically improve treatment outcomes.

Through a series of laboratory studies, researchers identified an autoantibody, NMO-IgG, a protein produced by the immune system that mistakenly attacks the body. NMO-IgG is present in the blood of nearly three-quarters of people with NMO, in nearly one-half of people whose symptoms were classified as being at high risk for developing NMO, and in none of those diagnosed with MS or other neurological or autoimmune disorders. Results suggest that this NMO-specific 'marker' is sufficiently powerful to aid the diagnosis of NMO in people whose symptoms may indicate either NMO or MS.

Clinicians can request the blood test of NMO-IgG from Mayo Medical Laboratories.

These findings were recently reported in The Lancet (2004 Dec 11; 364 [9451]: 2106-12).

Once, it was all about preserving the public trust. Now, it is all about regaining that trust.

All of the 18,000 plus employees of the National Institutes of Health (NIH) are now subject to stringent new restrictions on outside consulting, stock holdings, and other forms of income from drug companies and biotech companies due to new regulations that went into effect in early February.

Issued by the Department of Health and Human Services and the Office of Government Ethics, the new rules will finally end over a year of internal and congressional investigations into allegations of conflicts of interest involving NIH scientists and administrators.

Under the new system, employees cannot be paid to consult, speak, write or teach for any drug or biotech company, medical device maker, health provider or insurer, or trade or professional group. According to one NIH official, about 100 agency scientists were previously involved in collaborations that are now banned under the new policy.

The new changes signify the reversal of a trend toward relaxed relationships between NIH researchers and drug and biotechnology companies that began in 1995.

In addition, the FDA will create a new independent Drug Safety Oversight Board to monitor drug safety issues and keep doctors and patients up-to-date on emerging research and the risks and benefits of medicines.

Researchers report that exposure to an infant sibling in the first six years of life was associated with a reduced risk of MS among 408 people studied in Tasmania, Australia. A history of exposure to infants was also associated with reduced reactivity to certain infectious agents.

According to the authors, this study may strengthen the idea known as the "hygiene hypothesis," which suggests that exposure to infections early in life may alter immune activity and decrease the risk for disorders such as MS.

Dr. Anne-Louise Ponsonby, Australian National University, Canberra, and colleagues, interviewed 136 people with MS and 272 people without MS between 1999 and 2001. The interview included questions on number of siblings and their dates of birth, whether siblings resided in the same residence, and illness history. Researchers also drew blood samples to determine the presence of immune-system antibodies to Epstein-Barr virus, indicating prior exposure to the virus that can cause infectious mononucleosis and other diseases that have been linked to the risk of MS in some studies.

Results suggest that the longer people were cumulatively exposed to any siblings younger than two years, the more reduced their risk of developing MS. Exposure to infant siblings also was linked with a reduced response to Epstein-Barr virus in people who did not develop MS. Among the 272 people without MS, one year of exposure to an infant was also associated with a reduced risk of developing mononucleosis when they were older.

In 2003, this group had reported evidence in the British Medical Journal that increased sun exposure during ages 6 to 15 was associated with a decreased risk of MS. Therefore, in this current study, they also investigated past sun exposure. They found that the association between having younger siblings by age six and reduced risk of MS was significantly stronger in people who had higher winter sun exposure during childhood.

This study utilized an interesting method to determine whether early exposure to infectious agents, in this case the infant carriers of such agents, is 'protective' against the future development of MS. These findings were reported in the January 26 issue of the Journal of the Medical Association (JAMA), 1005:293:463-469.

Further research is necessary to confirm these findings and also to determine the possible underlying mechanisms whereby childhood infection or sun exposure may trigger immunomodulation.

Alternative Health Options & Forty Years of MS is Charles (Tip) Tiffany's first self-published book. Tip has long been interesting in non-traditional treatments and believes that these alternative therapies may help some people improve their quality of life. The author's personal alternative treatment history includes reflexology, chelation therapy, acupuncture, kinesiology, bee venom injections, and more. Some therapies were beneficial, while other were not. It is important to note that the author does not advocate or promote any one therapy. His book is meant to serve as a guide to others with MS interested in exploring every available option.

Editor's Note: Each person and situation is unique. Therefore, we advise all individuals with MS to seek medical consultation prior to starting any alternative therapy.

Multiple Sclerosis: Uncovering its Hidden Blessings, was self-published by Wendy Peck and co-written with Erika Coachman. A compassionate and candid narrative that reads like a journal, the book also includes several letters written to special people that have been there for Wendy through the ups and downs of MS. In the last section, the author encourages others to begin keeping a blessings journal, offering helpful, thought-provoking questions and a few blank pages to encourage others to begin the therapeutic journey that has changed her life.

"When you have times you're feeling alone, remember, you're not. I'm here. I'm Wendy," she writes.

To order this book, visit http://www.authorhouse.com

Calling all swimmers! The Nathan B. and Florence R. Burt Foundation, Inc. has awarded the Rocky Mountain MS Center with a $2,000 Challenge Grant for their Hydrotherapy Programs. The Burt Foundation will match every dollar raised this spring, up to $2,000. To meet this challenge, the Rocky Mountain MS Center is launching its inaugural Hydro Challenge Month this March! Participants in the hydrotherapy programs will be raising pledged funds for every lap they can swim or walk in the month of March.

But no matter where you live, you can get in the swim of the Hydro Challenge. It is open to anyone who would like to participate. Please visit the Rocky Mountain MS Center's website at http://www.mscenter.org for more details on how you can swim or walk laps in your local pool during the month of March. You can download fact sheets and pledge sheets on the website. If you have any questions, call Michele Harrison at 303-813-0580.

For years, physicians have wondered why women develop MS almost twice as often as men. Now, an international research team, under the direction of Mayo Clinic, has identified a genetic variation that may shed some light on this baffling question.

The report, from collaborators in Minnesota, Northern Ireland, Belgium and Italy appears in the January 27 online publication of the journal Genes & Immunity.

According to the study's lead author, May Clinic neurologist Brian Weinshenker, M.D., "In practical terms, this is what our findings suggest: How much of the protein known as 'interferon gamma' you produce appears to be a new key variable in understanding who gets MS and who doesn't, and especially why women develop MS more often than men. If you have a gene that produces high levels of interferon gamma, it may predispose you to developing MS. Under this scenario, men get MS less often because they have a lower frequency of a gene variant that is related to a higher secretion of interferon gamma."

According to researchers searching for a cure for MS, these findings are significant for three main reasons:

It provides a target at which to direct future investigations into ways to stop MS.

It provides leads on ways to improve treatments that can minimize the tissue and nerve damage caused by the disease.

It may advance the search for new treatments for other diseases.

"Our finding isn't the whole genetic cause, but it's a helpful step that could lead us to a more complete understanding of MS - and ultimately, effective treatment," Dr. Weinshenker stated. "It's also a very promising lead about gender differences that may pertain to susceptibility of other diseases, too, such as rheumatoid arthritis."

Interferon gamma belongs to a group of proteins that communicate with cells. Mayo Clinic researchers have shown that women and men naturally express different levels of interferon gamma. Other experiments have shown that high levels of interferon gamma could intensify the MS damage processes and make the disease worse.

2005 COOLING PROGRAM

If heat worsens your MS symptoms, we can help. Cooling is an easy treatment that often brings rapid relief, including improvement in muscle strength, fatigue, and balance.

Experience the benefits of cooling through the MSF's 2005 Cooling Program. The cooling cycle continues through June 1st. We offer the practical and popular cooling vest, along with brim hats, wristbands and neckties. Applications are available online at http://www.msfocus.org or by calling 1-888-673-6287.

If you were diagnosed with MS a decade or more ago, you may have been told not to exercise. This is because doctors once believed that the stress on the body and the increase in body temperature associated with exercise could prove harmful to those with MS.

However, recent research has demonstrated that quite the opposite is true! In fact, numerous studies have shown the safety and efficacy of appropriately designed exercise programs for individuals with MS, including increased muscle strength, improved aerobic capacity, and positive influences on quality of life.

Learn about the many fitness options available - from aquatics and hippotherapy to yoga, Pilates, T'ai Chi and adaptive sports. Call 1-888-MSFOCUS (673-6287) or send an email to support@msfocus.org

to request your free copy today! Coming soon: Nutrition & MS.

We would like to announce the availability of three new fact sheets for individuals with MS and their families.

Seven-year-old Billy just learned that his mom has MS. Read this story with your child to open up the lines of communication about MS.

· When the Going Gets Tough, the Tough Get Help

Learn to recognize and overcome barriers to getting the help and support you need.

· Access Resources in Your Community

Learn how the MSF can help you access and utilize community resources.

Share this information with your friends, family, support group members, co-workers, and employers. Coming soon: An Employer's Guide to MS in the Workplace. Call 888-MSFOCUS (673-6287) to request your copies today!