MS Forum Site of information

Welcome to MS-Forumsite.com Where you will find information more than Just for MS. I have MS and I spend alot of time researching and getting all the information I can out there about MS and other illness. If you find this site as good as alot people tells me , if you can a small donation would help me keep it going...if not just enjoy it while it still active. This is a sister site to www.mstelethon.org. a fun one www.wackyandnuts.com thank you

Teri Garr: Role model

Teri Garr has a new mission as an MS LifeLines™ Ambassador: “I will change the way people think about MS.”

Many of us probably have a favourite Teri Garr movie or scene — one that always makes us laugh or smile. This Academy Award®-nominated actress has touched us for years through her many memorable roles, lighting up the screen with her warmth, charm, and quirky humor. Whether she was playing the skeptical and neurotic wife of Richard Dreyfus in Close Encounters of the Third Kind or delivering her scene-stealing performance in Young Frankenstein, Teri has been making us laugh for a long time. And most recently, she has made millions laugh as Phoebe’s mom on Friends.

Now Teri has taken on a new role and it may just be the most important and challenging role of her life. As always, Teri’s warmth, charm, and humour are making an impact. Teri is on the road in the United States as an MS LifeLines™ Ambassador, speaking to people living with MS. She speaks to them from experience. Teri has MS. The MS LifeLines™ Ambassador Program, a U.S. educational support service for people living with MS and their families, is sponsored by Serono Inc. and Pfizer Inc.

Coming out

The world first learned of her diagnosis during an interview with Larry King on CNN two years ago. Teri’s good spirits and humour in the face of this disease were remarkable yet surprising. Many expected Teri to handle herself differently.

“Some people were very critical of my attitude on Larry King. It feels like they want me to throw my head against the wall and cry for help. Wouldn’t that be a bit of a bloody mess?” It is that same attitude which has motivated many people with MS to keep fighting.

Teri never plays the victim unless the role calls for it. Being an MS LifeLines™ Ambassador definitely does not. “A victim is not who I am. It’s almost like if you don’t cry and complain, then people think that you aren’t sick. With MS, I am just dealing with the cards I am dealt, and just like Kenny Rogers said, ‘you gotta know when to hold ‘em, know when to fold ‘em.’”

How does she stay so positive? Keeping active has a lot to do with it. “So I have a diagnosis of MS. Okay. So now what? Well, I’ve got a lot of stuff to do!” she says. That “stuff to do” seems to be what keeps her going — and going and going.

To know or not to know

For years, Teri’s MS went undiagnosed. Her symptoms would come and go for long periods of time. Various health care professionals had different diagnoses. Finally, a diagnosis of MS was confirmed. Teri says she then went into her first method of treatment: Denial! For her, and many other newly diagnosed, the term “MS” was actually scarier than the condition. But knowing that it is MS has been a good thing.

“Now I’m so aware of every little twinge and every little thing. But on the other hand, it’s better that I know. Because now I can treat it. I don’t have to just freak out about my body going cuckoo.”

Use it or lose it

“If you don’t use it, you lose it.” This is Teri’s philosophy for herself and others living with MS. Her usual workout routine is Pilates®.

“I think for people with MS, it’s got to be slow and strong. So for me, Pilates® is great. You use the muscles you don’t think about using.”

Aside from staying physically active, Teri has other tips to share:

Find out more about your treatment options
“The more you know, the better decisions you can make for yourself.”

Start treatment as soon as you are diagnosed
“The best thing is to see a health care professional and get treated rightaway. Being treated early is key.”

Stay positive
“Keep a good attitude!” For Teri, it was the hardest thing to do, but the most important.
In her new role as an MS LifeLines™ Ambassador, helping people with MS stay positive has become her mission.

Laughter: the second best medicine

People in the MS community are turning out in record numbers to hear her story. While she definitely makes the crowd laugh, she also makes a special connection with them. She is not just a celebrity anymore. She is a person living with MS. Just like them. She is facing the same daily challenges and hoping that a cure is discovered soon. Ready to battle against MS.

Recently, at a gathering of MS medical professionals, she said, “I’m so glad to be talking to people where being on a drug is a good thing!” Teri continues, “People just want to hear your perspective as a patient, and a little humour never hurts.”

Teri never glamourizes her life to inspire others. When she tells her story, you can tell she is letting the audience in on her own personal struggle with MS. And she always takes time to speak with everyone. She does not just fly out the door after her speech. She talks and listens. She has inspired many people living with MS to take a look at their own lives and makes changes for the better.

One door closes, another one opens

It might sound like a cliché, but not for Teri. What is next for her? Teri has played many roles. Dancer. Actress. Mother. Now an MS LifeLines™ Ambassador. What is ahead? Author.

“I want to write novels. I want to write my story, too.”

She and a friend are writing a two-character play about MS. A whole new world of writing has opened up for her. But Teri thinks she would have pursued this endeavour “whether I had MS or not.” Of course she would have. It would be the role of a lifetime.

Couresty of MSProgram.ca.com

News
MS GENE IS IDENTIFIED
Article: Nature Genetics 37 , 486 - 494 (2005)
Published online: 10 April 2005; | doi:10.1038/ng1544

MHC2TA is associated with differential MHC molecule expression and susceptibility to rheumatoid arthritis, multiple sclerosis and myocardial infarction

Antigen presentation to T cells by MHC molecules is essential for adaptive immune responses. To determine the exact position of a gene affecting expression of MHC molecules, we finely mapped a previously defined rat quantitative trait locus regulating MHC class II on microglia in an advanced intercross line. We identified a small interval including the gene MHC class II transactivator ( Mhc2ta ) and, using a map over six inbred strains combined with gene sequencing and expression analysis, two conserved Mhc2ta haplotypes segregating with MHC class II levels. In humans, a -168A G polymorphism in the type III promoter of the MHC class II transactivator ( MHC2TA ) was associated with increased susceptibility to rheumatoid arthritis, multiple sclerosis and myocardial infarction, as well as lower expression of MHC2TA after stimulation of leukocytes with interferon-. We conclude that polymorphisms in Mhc2ta and MHC2TA result in differential MHC molecule expression and are associated with susceptibility to common complex diseases with inflammatory components.

A Phase 3, Multi-Center Trial of Oral, Sustained-Release Fampridine (4-Aminopyridine) in Multiple Sclerosis

Andrew Goodman, Steven Schwid, Rochester, NY, Theodore Brown, Seattle, WA, Lauren Krupp, Stony Brook, NY, Randall Schapiro, Golden Valley, MN, Lawrence Marinucci, Ron Cohen, Andrew Blight, Hawthorne, NY.

OBJECTIVE: To assess efficacy and safety of oral sustained release fampridine (Fampridine-SR) in patients with multiple sclerosis (MS).

BACKGROUND: Prior studies of fampridine in MS have reported beneficial effects on motor function, including ambulation. This study was designed to confirm such effects and to validate their clinical meaningfulness.

DESIGN/METHODS: Randomized, double-blind, placebo-controlled, parallel-group study comparing 10 mg fampridine bid and placebo (3:1 ratio). A 2-week placebo run-in was followed by a 14 week treatment period, and a 4 week follow-up period. Eligibility criteria included: definite MS diagnosis, with any type of MS clinical course; age 18-70; completion of the Timed 25-Foot Walk (T25FW) within 8-45 seconds at screening; concomitant medications permitted on a stable regimen throughout trial.

The primary outcome measure was the proportion of responders with consistent improvement in walking speed on the T25FW during the treatment period. The Multiple Sclerosis Walking Scale 12 (MSWS-12) was used to assess clinical meaningfulness.

RESULTS: 301 patients were randomized; 229 received fampridine and 72 placebo. 283 patients completed the trial (n = 212, 71). The fampridine-treated group had a higher proportion of responders, compared to the placebo group (34.8 % v. 8.3 %; p < 0.001). Response rates were higher across all clinical course types. Improvement in walking speed was consistent through the 14 week treatment period among patients who responded to fampridine and remained significantly different from placebo after 14 weeks (p < 0.001).

Responders v. non-responders showed significant improvement in the MSWS-12 (p < 0.001). Adverse events were similar to those observed in previous studies of fampridine in MS. Two serious adverse events attributed to fampridine that led to discontinuation were anxiety in one participant and a seizure during a period of urosepsis in another.

CONCLUSIONS/RELEVANCE: A significant proportion of MS patients treated with fampridine experienced consistently improved walking speed during 14 weeks of treatment. Improvement in the MSWS-12 score among responders appears to validate the clinical meaningfulness of this improvement.

Supported by: Acorda Therapeutics Inc., Hawthorne, NY.

Hi
I am not much for a immediate cure for MS... but boy wouldn't it be nice.
well I was give a home herbal remmedy to help out the side affects of MS.

I am in my seconardy progression, been getting up there... was out of my med injects from doc's orders but now back on my rebrif , was on copaxone and avonex and wouldn't be give the betamethsone.

I was at a point in my life consider sudicial and was almost on a 3 day watch... but wasn't. (thank God)

Any I have this site and to help it out some if you want the remendy I accept paypal.. on the home page there is an donation button that will go to my acct.

I am only ask $1.25 for it..... and I will provide you with more information.
if interested.. let me know.

Thanks Everyone for at least reading my site news and keeping inform of all that is going on.......

as you all hope for a cure one day... I am walking with a cane but at times i need my chair........ i am only 37 yrs old and too young for this and with my husband being a gulf war vet he is disabled too. So these site is all i have for extra income... If you want to donate , I would appriecate it very much.. if not... it's ok.
Thank you AGain.

God Bless

Multiple Sclerosis Rates Up 50%

Review Tracking Neurological Disorders Shows 1 in 1,000 Americans Have Multiple Sclerosis By Miranda Hitti
WebMD Medical News Reviewed By Louise Chang, MD
on Monday, January 29, 2007

Jan. 29, 2007 -- Multiple sclerosis (MS)Multiple sclerosis (MS) may be 50% more common in the U.S. than previously thought, according to a new research review.

The review from the National Institute of Neurological Disorders and Stroke says almost one in 1,000 people in the U.S. have MS.

However, the National Multiple Sclerosis Society says that figure could still be low.

The society points out that the review's estimate of MS prevalence (the number of people with MS) works out to about 266,000 people.

But the society says it has "over 300,000 people" in its database who say they have MS.

The Review

The review's researchers included Deborah Hirtz, MD, of the National Institute of Neurological Disorders and Stroke, which is part of the National Institutes of Health (NIH).

They analyzed 500 studies published from 1990 to 2005 to track MS and 11 other neurological disorders. Their findings appear in the Jan. 30 issue of Neurology.

Since high-quality U.S. data on most disorders were lacking, the researchers often applied data from other countries to the U.S. population.

That approach isn't ideal, the researchers admit. They call for better studies to track neurological disorders in the U.S.

Still, they say their findings show "the burden of neurologic illness affects many millions of people in the United States."

Multiple Sclerosis Findings

"Our estimate of MS prevalence is about 50% higher than a comprehensive review from 1982," Hirtz says in an American Academy of Neurology news release.

"Whether this reflects improvement in diagnosis or whether incidence is actually increasing deserves further study," Hirtz says.

How Common Are Neurological Conditions?

In addition to MS, the researchers tracked the prevalence of the following conditions:

Migraine: 121 in 1,000 people
EpilepsyEpilepsy: 7.1 in 1,000 people
Alzheimer's diseaseAlzheimer's disease: 67 in 1,000 people 65 or older
Parkinson's diseaseParkinson's disease: 9.5 in 1,000 people 65 or older
AutismAutism spectrum disorders: 5.8 in 1,000 children
Cerebral palsyCerebral palsy: 2.4 in 1,000 children
Stroke: 10 per 1,000 people
Traumatic brain injury: No prevalence estimates available
MS: 0.9 in 1,000 people
Spinal cord injury: No prevalence estimates available
ALSALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease): 0.04 in 1,000 people
Tourette's syndrome: No prevalence estimates

Conditions Not Tracked

Conditions Not Tracked

These conditions aren't necessarily the most common neurological disorders, note Hirtz and colleagues.

For instance, they didn't track sleep disorderssleep disorders, chronic pain, or mental retardation.

And though autismautism and cerebral palsycerebral palsy are lifelong conditions, data were only available for cases in children.

Trends in Conditions

Besides the rise in MS prevalence, the researchers also note a "possible" increase in nonfatal strokestroke and a "substantial" rise in Alzheimer's diseaseAlzheimer's disease, compared with the 1982 review.

Those trends are likely due to America's agingaging population and better diagnosis, according to the review.

Traumatic brain injuries are down by about half since the 1982 review.

"It is likely that this reflects more restrictive hospital admission criteria, although improvements in motor vehicle safety may also contribute," write Hirtz and colleagues.

They note no major changes in rates of cerebral palsy, epilepsyepilepsy, migraine, ALSALS, or Parkinson's diseaseParkinson's disease.

Previous estimates weren't available for autism spectrum disorders or Tourette's syndrome.

Past data were "too sparse" to track trends in spinal cord injury, the researchers say.

Concerns Over MS Estimates

The National Multiple Sclerosis Society is voicing concern that the review underestimates multiple sclerosis in the U.S.

In a news release, the society says it "applauds the efforts of the NIH to document the importance of neurological disorders."

However, there is "considerable uncertainty about the exact number of people in the U.S. who have MS," says the society.

The society agrees with the reviewers that better studies are needed to improve the accuracy of MS estimates.

--------------------------------------------------------------------------------

SOURCES: Hirtz, D. Neurology, Jan. 30, 2007; vol 68: pp 326-337. Albert, S. Neurology, Jan. 30, 2007; vol 68: pp 322-323. News release, American Academy of Neurology. News release, National Multiple Sclerosis Society.

--------------------------------------------------------------------------------

© 2007 WebMD Inc. All rights reserved.

for Multiple Sclerosis
[Business Wire]

Release Date: 1/30/2007

Business Wire via NewsEdge Corporation :

THE WOODLANDS, Texas--(BUSINESS WIRE)--Jan. 30, 2007--Opexa Therapeutics,
Inc. (NASDAQ: OPXA), a company involved in the development and
commercialization of cell therapies, announced today that it has admitted
the first 75 patients in its 150-patient Phase IIb clinical trial of
Tovaxin(TM) in multiple sclerosis. Enrollment is expected to be completed by
mid-2007. There are currently 34 trial sites in the U.S., all of which are
actively recruiting patients.

David McWilliams, president and chief executive officer of Opexa, commented,
"Given the efficacy and safety demonstrated in our Phase I/II study of
Tovaxin and the emerging understanding in the scientific literature of the
involvement of pathogenic T-cells in multiple sclerosis, this trial has been
highly anticipated in the MS community. We are excited about the enrollment
interest we are receiving and feel comfortable that we will be able to
achieve our 100% enrollment goal in the first half of this year."

Jim Williams, Ph.D., chief operating officer of Opexa, commented, "We are
pleased to have reached this important milestone in our clinical program for
the development of Tovaxin as a first line therapy for multiple sclerosis.
The admission of 75 patients into the Phase IIb trial attests to the ability
of Opexa to organize its clinical trials, including patient recruitment,
site selection and manufacturing capacity as we meet the challenge of
developing a patient-specific autologous T-cell vaccination therapy for
multiple sclerosis."

As previously announced, this Phase IIb clinical study will include 150
patients in a multicenter, randomized, double blind, placebo-controlled
trial designed primarily to evaluate the efficacy, safety and tolerability
of the Tovaxin T-cell vaccination with clinically isolated syndrome (CIS)
and relapsing-remitting MS (RR-MS) patients. A total of 100 patients will
receive Tovaxin, while 50 will receive placebo. The study is designed as a
two-arm, 52-week, parallel-group study, whereby patients will be given five
subcutaneous injections at 0, 4, 8, 12 and 24 weeks. The analyses will be
performed at the end of the 52-week study to assess the safety and efficacy
of Tovaxin. The primary efficacy variable is the cumulative number of
gadolinium-enhancing lesions on T1-weighted MRI scans summed over the Week
28, 36, 44, and 52 MRIs. The secondary efficacy variables are the cumulative
number of new gadolinium-enhancing lesions at Weeks 28-52, the change in
T2-weighted lesion volume, and the annualized relapse rate.

All patients who complete the trial will be eligible to participate in an
optional one-year extension study, in which they will receive Tovaxin under
an open-label protocol. The open-label study is being planned under a
different protocol that will be submitted to the FDA.

About Opexa Therapeutics

Opexa Therapeutics develops and commercializes cell therapies to treat
autoimmune diseases such as MS, rheumatoid arthritis, and diabetes. The
Company is focused on autologous cellular therapy applications of its
proprietary T-cell and stem cell therapies. The Company's lead product,
Tovaxin(TM), a T-cell therapy for multiple sclerosis is in Phase IIb trials.
The Company holds the exclusive worldwide license for adult multipotent stem
cells derived from mononuclear cells of peripheral blood. The technology
allows large quantities of monocyte derived stem cells to be produced
efficiently for use in autologous therapy, thus circumventing the threat of
rejection. The Company is in preclinical development for type 1 diabetes.

Safe Harbor Statement

This press release contains "forward-looking statements," including
statements about Opexa Therapeutics' growth and future operating results,
discovery and development of products, strategic alliances and intellectual
property, as well as other matters that are not historical facts or
information. These forward-looking statements are based on management's
current assumptions and expectations and involve risks, uncertainties and
other important factors, specifically including those relating to Opexa
Therapeutics' ability to obtain additional funding, develop its stem cell
technologies, achieve its operational objectives, and obtain patent
protection for its discoveries, that may cause Opexa Therapeutics' actual
results to be materially different from any future results expressed or
implied by such forward-looking statements. Opexa Therapeutics undertakes no
obligation to update or revise any such forward-looking statements, whether
as a result of new information, future events or otherwise.

CONTACT: Opexa Therapeutics, Inc. Lynne Hohlfeld, 281-719-3421
lhohlfeld@opexatherapeutics.com or Investor Relations Contacts:
Lippert/Heilshorn & Associates Kim Sutton Golodetz, 212-838-3777
kgolodetz@lhai.com Bruce Voss, 310-691-7100 bvoss@lhai.com KEYWORD:
TEXASINDUSTRY KEYWORD: PHARMACEUTICAL MEDICAL BIOTECHNOLOGY PRODUCTSOURCE:
Opexa Therapeutics, Inc.

NATIONAL MS EDUCATION & AWARENESS MONTH

National MS Education & Awareness Month is rapidly approaching. There are so
many ways that you, your friends, family members, and MS support groups can
participate! Our theme this year is Lights, Camera, Action!

We have three international teleconferences and two webchats planned for the
month, along with several regional events. Empower yourself by joining us
for these unbiased educational programs. We will provide specific details
soon.

MS Awareness Kits, filled with educational literature created for those with
MS as well as their families and care partners, are free upon request.
Simply send an email to awareness@msfocus.org.

We encourage you to take action during the month by planning a fundraiser,
special event, or educational program in your community. If you need help
getting started, call our Community Relations Department at 800-225-6495 or
send 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
and Awareness Month. Do it for yourself. Or, do it for someone you know who
is newly diagnosed. Whatever you do, play a part in Lights! Camera! Action!

There are many debates over the specific causes of multiple sclerosis. However, in the absence of conclusive evidence, medical scientists can only speculate upon the causes and risk factors behind multiple sclerosis and other similar autoimmune diseases. Although certain theories regarding a series of multiple sclerosis specific triggers have been partially confirmed by recent medical studies, doctors need additional data in order to identify the exact set of multiple sclerosis causes.

At present, medical scientists believe that genetic factors play a major role in the occurrence and development of multiple sclerosis. However, the specific genes involved in triggering the disease haven't yet been identified. It is suspected that multiple sclerosis occurs due to a combination of genetic factors corroborated with a series of environmental factors. The autoimmune response characteristic to multiple sclerosis is also believed to be triggered by prolonged exposure to chemicals (long-term treatments with chemotherapeutic drugs are suspected to facilitate the development of multiple sclerosis) or by past infections.

The genetic theories regarding the occurrence of multiple sclerosis have been recently confirmed by medical investigations. The implication of genetic factors is primarily suggested by the pronounced hereditary character of the disease. Similar to other types of autoimmune diseases, multiple sclerosis can be easily transmitted from one generation to another. Recent studies in the field have identified the fact that blood relatives of patients with multiple sclerosis have 5 to 30 percent chances of developing the disease as well. While identical twins (sharing many genetic features) of patients with multiple sclerosis present the highest risk of developing the disease over time, the risks of inheriting multiple sclerosis are slightly lower for second and third degree relatives.

Another plausible theory incriminates infectious agents as the main triggers for multiple sclerosis. The implication of certain infectious agents in causing and sustaining the progression of multiple sclerosis may explain why this form of autoimmune disease tends to affect people of all ages and regardless of gender and ethnical provenience. Another reason why infectious agents are considered to have a major implication in multiple sclerosis consists in the similarities between the morphology of myelin and certain groups of infectious viral agents.

Some viral agents are very similar to myelin, the protein that is primarily destroyed in multiple sclerosis. These similarities may be the main reason why the immune system becomes confused and fights against healthy nerve cells covered in myelin. The categories of infectious agents believed to have a role in the development of multiple sclerosis are herpes viruses (HHV-6 the cause of childhood roseola), Chlamydia Pneumoniae (atypical group of bacteria associated with inflammation of the circulatory system), the Epstein-Barr virus (responsible for causing mononucleosis), measles virus, retroviruses (HIV, HTLV-I, HTLV-II) and polyomavirus.

Other potential causes of multiple sclerosis are physical traumas (injuries at the level of the spinal cord), as well as emotional stress (recent studies have revealed that the symptoms of multiple sclerosis are amplified on the premises of emotional stress).

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FDA Agrees to Fast Review for Pill Being Tested for MS

-- Company Still Recruiting for Clinical Trial

September 21, 2006

It was announced today by the drug maker Serono (Geneva) 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. The two-year, placebo-controlled clinical trial of oral cladribine, called the CLARITY study, is still recruiting patients with relapsing-remitting MS in 16 states: CO, GA, IL, IN, MD, MI, NJ, NC, NV, NY, OH, OK, OR, SC, WA, WV. (Information about this trial is available at www.clinicaltrials.gov/show/NCT00213135; for information about participating in this trial, go to www.theclaritystudy.com/nmso.)

-- Research and Clinical Programs

Financial Assistance for MS Patients

Here is some information for MS patients on getting financial assistance with the expense of Tysabri and other MS drugs, and for those who want to make a tax deductible donation to assist MS patients.

For MS patients who may want to be evaluated for the new MS drug Tysabri, you must first qualify for Tysabri under its labeling and get enrolled in the TOUCH program through a TOUCH-enrolled neurologist. If you do not have a TOUCH-enrolled neurologist, within the next few weeks Biogen's MS ActiveSource program (1-800-456-2255) will be set up to give you several nearby TOUCH-enrolled neurologists organized by ZIP Code. Once you have been examined by a TOUCH-enrolled neurologist, obtained your required baseline MRI and have been enrolled in the TOUCH program, you will be assigned a Case Manager by Biogen through their MS ActiveSource program. The Case Manager will assist you and your neurologist with insurance reimbursement issues, including insurance co-payment assistance or with getting free Tysabri if you do not have insurance.

This information below is also applicable to those seeking assistance with the cost of other MS drugs.

Co-payment Assistance:

While MS Patients For Choice is getting itself organized as a 501(c)(3), there is an existing organization that can assist MS patients who need assistance with Tysabri co-payments, the National Organization for Rare Diseases.

Here is their contact information:

NORD MS Premium /Co-Payment Assistance Program
Conditions:
Multiple Sclerosis
Contact:
1-800-634-7207
NORD MS Medicare Co-Payment Assistance Program
Conditions:
Multiple Sclerosis (MS)
Contact:
1-866-924-0100
Free Tysabri for the Uninsured and Under Insured:

Biogen may be agreeable to making free Tysabri available to those patients who are uninsured and under insured. Work with your Case Manager at MS ActiveSource to pursue this route.

How Others Can Help:

NORD is in discussions with Biogen about setting up a fund specifically for Tysabri co-payments for privately insured patients. However, it is against the law for such a fund to be set up specifically earmarked for Tysabri for Medicare and Medicaid patients, and most drug companies are reluctant to contribute to a general fund for MS patients as those funds can be used for the competitors' drugs (who may not be making similar contributions). However, individuals can make contributions that are earmarked for co-payment assistance for a specific drug, so here is a link to the NORD website to make such a tax deductible contribution: http://www.rarediseases.org/helping/donate