ParfumGigi@aol.com

Multiple Sclerosis Foundation Internet Newsletter January 2007 Issue
We value your opinions!
Please let us know what you think of the MSFYi, this month's features, or send ideas for future issues.
JANUARY 2007 - MSFYi
"When we feel stuck, going nowhere - even starting to slip backward - we may actually be backing up to get a running start." ~ Dan Millman
In This Issue:
* RESPITE FOR CAREGIVERS!
* PARASITIC INFECTION MIGHT BENEFIT THOSE WITH MS
* JOIN THE MS GLOBAL DINNER PARTY!
* PETITION TO INCREASE FUNDING FOR MS RESEARCH
* 'SUNSHINE VITAMIN' PROTECTS AGAINST MS
* ELEVATED URINARY EXCRETION OF ALUMINUM AND IRON
* THIS MARCH - DANCE TO CURE MS!
* NEW ASSISTANCE PROGRAM FOR THOSE ON BETASERON
* STEM CELL SUMMIT HIGHLIGHTS AVAILABLE
* MBP8298 PHASE III SPMS TRIAL CLEARED BY FDA
* INDIVIDUALS WITH MS SOUGHT FOR MARKET RESEARCH
MSF News
* NATIONAL MS EDUCATION & AWARENESS MONTH® EVENTS
* MSF HOSTS 3rd ANNUAL NURSE SYMPOSIA
* 2007 MSF CRUISE FOR A CAUSE TO ALASKA

On December 21, 2006, the Lifespan Respite Care Act of 2006 (HR 2348) was signed into law. This is a long-awaited victory for the millions of Americans caring for a loved one in the home.

The new law will authorize $289 million over five years for state grants to develop Lifespan Respite Programs to help families access quality, affordable respite care. In the Act, Lifespan respite programs are defined as "coordinated systems of accessible, community-based respite care services for family caregivers of children and adults with special needs."

Specifically, the law authorizes funds for the development of state and local lifespan respite programs; planned or emergency respite care services; training and recruitment of respite care workers and volunteers; and caregiver training.

In time, the Lifespan Respite Care Act will reduce family stress as well as the risk of abuse and neglect. It will allow families to stay involved in their communities and establish additional support systems. It will allow families and caregivers to revitalize and avoid burnout. It will improve the relationship between caregiver and care-receiver. In the long run, it will save public funds by reducing the need for residential, hospital, and other institutional living.
The passing of this bill into law is great news for caregivers everywhere - and it's about time!

Parasitic infections may actually benefit people with MS, suggests a study by researchers in Argentina. Such infections may affect the body's immune response in a way that alters the course of the disease. The study appears in the January issue of the Annals of Neurology.

While previous studies conducted in animals found that parasite infections could affect the course of autoimmune diseases, this is the first human study to examine the relationship between parasite infections and MS.

The study included 12 MS patients with a parasite infection and 12 MS patients who were parasite-free. The patients in both groups had a similar disease course, and were followed for an average of 4.6 years.

During the study, there were three clinical relapses of MS among those infected with a parasite, compared to 56 relapses in the group of uninfected MS patients. Those in the infected group were less likely to suffer increased disability due to MS.

The researchers also found that infected patients had much higher numbers of anti-inflammatory cytokines. These findings provide evidence that an autoimmune response caused by a parasite infection can decrease the normal inflammatory response associated with MS.

Parasite infections generate much higher levels of three types of immune cells, called regulatory T cells. While fighting the parasite infection, these three types of cells also happen to suppress a different part of the immune system that attacks myelin.

Earlier research, conducted at the Universities of Wisconsin and Iowa, found that the ingestion of worm eggs by mice with EAE (the commonly used animal model of MS) had the same beneficial effect. Findings were reported in 2003 (International Immunology, Vol. 15, No. 1, pp. 59-69).

"This is really interesting," comments MS Medical Advisor Ben Thrower. "People have wondered if such findings might explain some of the geographic distribution of MS, i.e., higher prevalence as one moves towards more temperate climates. Parasitic infections are more common in the tropics, where the prevalence of MS is lower. Parasitic infections generate a Th2 response. In contrast, viral infections are more common in temperate climates. Viruses induce a Th1 response, the same type of response that is overactive in MS. We may be able to generate a Th2 response using inactivated parasite eggs. So, it may be possible to obtain the 'good' Th2 immune response without actually developing a parasitic infection."

A parasite is an organism that lives in or on and takes its nourishment from another organism. A parasite cannot live independently. Parasitic diseases include infections by protozoa (a single-cell organism that can only divide within its host organism), helminthes (worm-like animals), and arthropods (insects).

Here's the chance to be a part of something big!

The Multiple Sclerosis International Federation (MSIF) invites us all to join the MS Global Dinner Party to show our commitment to helping people with MS and raising awareness of the disease worldwide.

The MS Global Dinner Party 2007 will be held on Saturday, February 24th, 2007. Events can be held for friends, family, neighbors, or co-workers, and can range from formal catered dinners to casual home gatherings. Rather than bringing a gift for the host, everyone invited to a Global Dinner Party event is asked to make a donation to support the fight against MS.

Find out more about participating in the MS Global Dinner Party 2007. It's fun, it's easy, and you can register online.

MSIF will even send you a Global Dinner Party Host Pack. Interested? Click here:

http://www.msif.org/en/news_press/news/gdp_2007.html.

Would you like to see an increase in federal funding for MS research?

The National MS Society is circulating a petition to collect at least 200,000 signatures from people who support additional federal funding for medical research for MS.

If you have MS, know someone with MS, or would like to help end its devastating effects, sign the petition today. Then forward it to someone you know.

Visit http://capwiz.com/nmss/issues/alert/?alertid=9167296&type=CU to learn more.

Plenty of vitamin D seems to help prevent MS, according to a study in more than 7 million people which offers some of the strongest evidence yet of the power of the 'sunshine vitamin' against MS. The study appeared in the December 20 Journal of the American Medical Association.

The research found that Caucasion members of the U.S. military with the highest blood levels of vitamin D were 62 percent less likely to develop MS than people with low levels.

There was no such connection in blacks or Hispanics, possibly because there were so few in the study. Also, the body makes vitamin D from sunlight, and the pigmented skin of blacks and other dark-skinned ethnic groups doesn't absorb sunlight as easily as pale skin.

The new research replicates previous findings in smaller studies that examined why MS has been more common in regions farther from the equator, where there is less intense year-round sunlight.

"This is the first large prospective study where blood levels are measured in young adults and compared to their future risk. It's definitely different and much stronger evidence," said Dr. Alberto Ascherio, senior study author and associate professor of nutrition at Harvard's School of Public Health. "If confirmed, this finding suggests that many cases of MS could be prevented by increasing vitamin D levels," Ascherio said.

Still, the findings don't prove that a lack of vitamin D can cause MS, so it's too early to recommend that people take vitamin D pills to avoid the disease.

The MS researchers worked with the Army and Navy in analyzing blood samples of military personnel stored by the Department of Defense. Military databases showed that 257 service men and women were diagnosed with MS between 1992 and 2004. The increased MS risk was especially strong in people who were younger than 20 when they entered the study. The researchers said these findings suggest that vitamin D exposure before adulthood could be particularly important.

There is some evidence that the incidence of MS is increasing in sunny regions including the South and West, possibly because people are avoiding the sun or using sunscreen to avoid skin cancer. Such practices have likely contributed to vitamin D deficiencies in adolescents and young adults.

In areas of low sunlight, supplements provide a reasonable alternative for vitamin D intake. But adequate intake of calcium and magnesium must accompany vitamin D supplementation as studies in mice have shown that calcium levels strongly affect the action of vitamin D.

Vitamin D is found in fortified milk and oily fish, but it's hard to get enough from diet alone. Sunlight is the biggest source of vitamin D, which is needed for strong bones.

UK researchers from Keele University used a battery of techniques to determine if the urinary excretion of markers of oxidative damage - iron and the environmental toxin, aluminum, and its antagonist, silicon - are altered in relapsing-remitting MS (RRMS) and secondary-progressive MS (SPMS).

Urinary concentrations of oxidative biomarkers, MDA and TBARS, were not found to be useful indicators of inflammatory disease in MS. However, urinary concentrations of iron, another potential marker for inflammation and oxidative stress, were significantly increased in SPMS, but were not significantly increased in RRMS.

Urinary concentrations of aluminum were significantly increased in both RRMS and SPMS. The levels of aluminum excretion in the former group were similar to those observed in individuals undergoing metal chelation therapy (an IV procedure in which chemicals that bind to metals are given for health reasons, such as lead poisoning).

The excretion of silicon was lower in RRMS, and significantly lower in SPMS. Increased excretion of iron in urine supported a role for iron dysmetabolism in MS. Levels of urinary aluminum excretion, similar to those seen in aluminum intoxication, suggested that aluminum may be a previously unrecognized environmental factor associated with the etiology of MS.

If aluminum is involved in MS then an increased dietary intake of its natural antagonist - silicon - might be a therapeutic option.

Silicon was once readily available to us through our diet. Today, modern food processing eliminates most of the silicon by removing the bran, which is the fibrous, high-silicon part of the plant. Silicon-rich foods include oats, potatoes, barley and millet, which refers to a variety of grains.

"It is likely that MS involves both genetic and environmental factors and research is rapidly unraveling the genetic pieces of the puzzle," comments MSF Medical Advisor, Ben Thrower, M.D. "To date, much of the focus on environmental factors has been on viruses, such as the Epstein-Barr virus. This study provides evidence that aluminum could play a role in the etiology of MS. The presence of high urine aluminum concentrations could mean more environmental exposure to the metal in people with MS. An alternative explanation is that aluminum levels in the brain and urine increase as a result of the damage caused by demyelination and axonal loss. Hopefully, larger studies will follow."

Volunteer Deb Dufault is hosting a dance benefit to raise funds and awareness for Accelerated Cure Project for MS, a national non-profit dedicated to curing MS by determining its causes. Dance to Cure MS will be a fun night out for adults to socialize, dance and eat - but most importantly - to provide hope to those with MS. The event will take place on Friday, March 2nd at The Chateau in Andover, Massachusetts.

Because this event will raise awareness of MS and empower those living with the disease, it has been designated a National MS Education & Awareness Month event by the Accelerated Cure Project.

For more information, call Deb Dufault at 603-434-9241 or send an email to deb103@mac.com.

Berlex has launched a new Patient Assistance Program to help ensure that Betaseron® (interferon beta-1b) is available to people with MS who, after exhausting all other avenues of coverage and assistance, cannot otherwise afford it.

The Betaseron Patient Assistance Program replaces the Betaseron Foundation, which ceased operations at the end of 2006. All participants who were active in the Betaseron Foundation at the end of 2006 who continue to meet the eligibility criteria will be transitioned into the new program. Enrollment is also available to new participants.

Similar to the Betaseron Foundation, participants in the new Betaseron

Patient Assistance Program will: Receive assistance in the form of medication

* Pay a participation fee for the program

* Meet eligibility based on financial and other relevant criteria

* Reapply for assistance every year

Participants will also receive medication training, access to live nursing support (24/7), reimbursement counseling, and other services offered through the MS Pathways program.

To learn more, please contact the Betaseron Patient Assistance Program at 877-836-5724.

To better understand and further explore the potential of stem cells in MS, the MS Society and the MS International Federation hosted a stem cell research summit from January 16-19, where a team of the world's leading experts in stem cell research collaborated and shared their expertise.

While this summit was structured for a small number of participants from the scientific community, key findings and highlights from the meeting are available to the MS community through a special webcast and/or podcast series.

Visit http://www.nationalmssociety.org/stemcell.asp.

While the MBP8298 Phase II/III study has been ongoing at trial sites across Canada and Europe, BioMS has now received clearance from the U.S. Food and Drug Administration (FDA) for the initiation of a Phase III clinical trial to investigate the drug as a treatment for patients with secondary progressive MS here in the U.S.

MBP8298 is a synthetic Myelin Basic Protein peptide (MBP) comprised of 17 amino acids. Administered as an intravenous injection, five minutes or less in duration, every six months, the drug is expected to induce immunological tolerance specific to the injected antigen.

The U.S. Phase III trial, named MAESTRO-03, will be enrolling approximately 510 patients who will be administered either MBP8298 or placebo intravenously every six months for a period of two years.

The primary clinical endpoint for the trial is defined as a statistically and clinically significant increase in the time to progression of the disease as measured by the Expanded Disability Status Scale in patients with HLA-DR2 and/or HLA-DR4 immune response genes. Up to 75% of all MS patients are HLA-DR2 and/or HLA-DR4 positive.

Results of the Phase II and long-term follow-up treatment of progressive MS patients with MBP8298, which were published in the European Journal of Neurology, show that MBP8298 safely delayed disease progression for five years in progressive MS patients with HLA-DR2 or HLA-DR4 immune response genes.

The MAESTRO-01 trial is currently being conducted at more than 50 sites across Canada and Europe and will enroll approximately 550 patients who will be administered either MBP8298 or placebo intravenously every six months for a period of two years.

To learn more, visit http://www.biomsmedical.com.

Here's an opportunity for individuals with MS in the Miami/Fort Lauderdale area to earn $50 for sharing their opinions.

Rife Market Research, a Miami-based company, is seeking males and females with MS to come to their office for a 40-minute confidential interview between Tuesday, January 23rd and Thursday, February 8th. Interviews will be scheduled at your convenience.

The purpose of this study is to learn about the reading habits of individuals diagnosed with MS and the role the media plays in their life. At the close of the interview, you will receive a check for $50 for your time.

If you would like to participate or learn more about this study, please call Gita Bal at 305-620-4244.
The MSF does not support or endorse this study.

This March, we are hosting three teleconferences and two webchats. These hour-long National MS Education & Awareness Month events will educate and empower you - right from the comfort of your own living room. You will have the opportunity to ask questions if you'd like, or you may simply listen.

Participation is easy. For the teleconferences, all you need is a phone and a quiet room. For the webchats, all you need is a computer with an Internet connection.

So, don't miss out. Register today and don't forget to mark your calendars!

***TELECONFERENCES***
THE EMOTIONAL ROLLER COASTER OF MS

Robert Godsall, Ph.D.

Wednesday, March 7, 2007, 8:00-9:00 p.m. EST

YOU CAN LIVE WELL WITH MS

Ben Thrower, M.D.

Wednesday, March 14, 2007, 8:00-9:00 p.m. EST

EXERCISE FOR EVERY BODY!

Jeff Segal, NSCA-CPT, CSCS

Wednesday, March 21, 2007, 8:00-9:00 p.m. EST

To register for these teleconferences, please call 800-350-5321.

Outside the U.S., please call 706-643-5941.

Frederick W. Foley, Ph.D.

Sunday, March 4, 2007, 5:00 p.m. EST

MSFRIENDS OPEN CHAT

Moderated by MSF

Sunday, March 11, 2007, 5:00 p.m. EST

For more information call: 888-MSFOCUS or visit www.msfocus.org. From the homepage, click on Calendar of Events.

MS Awareness Kits, filled with educational literature created for those with MS, their families and care partners, are going quickly. Request yours today by sending an email to awareness@msfocus.org.

If you have a website, newsletter, e-newsletter or blog, help us get the word out about National MS Education & Awareness Month. Do it for yourself. Or, do it for someone you know who is newly diagnosed. Whatever you do, play a part in National MS Education & Awareness Month!

All MS nurses are invited to join us for a Voyage to a Better Understanding of MS Care - a four-day Western Caribbean Cruise. This educational program, aboard Carnival Cruise Line's Imagination, will set sail from Miami on Thursday, March 8 and return on Monday, March 12th, 2007. Ports of call include Key West, Florida and Calica, Mexico.

This program will provide up to 13.2 contact hours through the Texas Nurses Association, an accredited approver of continuing nursing education by the American Nurses Credentialing Center's Commission on Accreditation.

Presented by MS nurses from across the country, the educational curriculum will provide updated and pertinent information needed by nurses who provide care for patients with MS. The educational program will also prepare the nurse for the International Organization of Multiple Sclerosis Nurses (IOMSN) certification board examination and may also be applied to re-certification credits.

Space for this program is limited and passports are required. For more information call Fun Cruise & Travel toll-free at 888-826-9660, or visit

2007 MSF CRUISE FOR A CAUSE TO ALASKA

The MSF Cruise for a Cause offers innovative, educational programs at sea for individuals with MS. This year, we will follow the Inside Passage from Seattle, Washington to Skagway, Alaska.
Don't miss this seven-night adventure, from June 8th through the 15th, aboard Royal Caribbean's Vision of the Seas. Ports of call include Juneau, Skagway, Tracy Arm Fjord, Prince Rupert, British Columbia, and Seattle, Washington!

Passports required! For more information call Fun Cruise & Travel toll-free at 888-826-9660, or visit

*****************************************************
**Editor's Note: The intent of this newsletter is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.

For questions regarding this publication, email editor@msfocus.org. For support services, email support@msfocus.org.

Please do not reply to this email address for correspondence.