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Saturday, February 13, 2010

Help Others Recognize MS Awareness Week

This month, Representative Barbara Lee (CA-9) and Senator Bob Casey (PA) will introduce a resolution to formally recognize MS Awareness Week. Take action today and urge your lawmakers to support MS Awareness Week.
MS Awareness Week will be recognized from March 8 to 12. Every year, the MS Coalition - an affiliation of independent MS organizations dedicated to improving the quality of life for those living with MS - joins together to recognize, support, and celebrate MS Awareness Week.
The MS Awareness Week resolution stresses the following important goals of MS Awareness Week: reaffirming our nation's commitment to creating a world free of MS, recognizing people living with MS, and saluting the health care professionals and medical researchers who continue to work towards a world free of MS. The resolution is a true indicator of the collective and bold support for the MS community.
Make sure that your Members of Congress join the MS movement. Take action today and send a letter to your Representative and Senators today, asking each to co-sponsor the MS Awareness Week bill.
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Australia Blocking Cell Movement for Cancer and Multiple Sclerosis

February 12, 10:03 AMLima Multiple Sclerosis ExaminerLori Friend

Shaun McColl and other researchers at the University of Adelaide in Australia have identified molecular receptors, a specialized cell or group of nerve endings that respond to sensory stimuli, on surface cells that help cells migrate to sites where they can cause disease. They are finding new ways to block those movements in the body.

Movements that can cause autoimmune diseases and the spreading of cancer.

Professor McColl is the Head of Chemokine Biology, Deputy Head of the School of Molecular and Biomedical Science and Deputy Executive Dean of the FAculty of Sciences at the University of Adelaide.

With his amazing resume and the successful ability of the University of Adelaide's to attract funding, Professor McColl and his team where able to identify a series of receptors in multiple sclerosis (MS) and have developed what could be therapeutic drugs that could control the disease. Along with other autoimmune diseases as well.

"A number of diseases like cancer and autoimmune diseases, such as multiple sclerosis and arthritis, involve the inappropriate migration of cells," says Professor McColl. "Our research shows that these receptors which help the cells migrate can be blocked pharmacologically, preventing the cell migration which causes the disease."


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Friday, February 12, 2010

Tysabri (Natalizumab): Update of Healthcare Professional Information - "IRIS"

source: FDA.gov

Audience: Neurological healthcare professionals, patients


[Posted 02/05/2010] FDA notified healthcare professionals and patients that the risk of developing progressive multifocal leukoencephalopathy (PML) increases with the number of Tysabri infusions received.


This new safety information, based on reports of 31 confirmed cases of PML received by the FDA as of January 21, 2010, will now be included in the Tysabri drug label and patient Medication Guide.


Information about the occurrence of Immune Reconstitution Inflammatory Syndrome (IRIS) in patients who have developed PML and subsequently discontinued Tysabri has also been added to the drug label.


IRIS is a rare condition characterized by a severe inflammatory response that can occur during or following immune system recovery, causing an unexpected decline in a patient’s condition after return of immune function.


Based on the available information, FDA believes that the clinical benefits of Tysabri continue to outweigh the potential risks. Revisions to the drug label and patient Medication Guide, with the continued use of the TOUCH Prescribing Program, are intended to maximize the safe use of Tysabri and the identification of new PML cases.


[02/05/2010 - Drug Safety Communication - FDA]



See other articles on this SUBJECT:


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Wednesday, February 10, 2010

Consider the inspiring story of Sylvia Lawry, the founder of the National Multiple Sclerosis Society.

What is a challenge—a roadblock or an opportunity? It's all in your point of view. Sometimes, a challenge, a frustration or a source of stress can energize us to think differently, discover the unexpected and accomplish great things. Consider the inspiring story of Sylvia Lawry, the founder of the National Multiple Sclerosis Society.

When Sylvia Lawry's brother was diagnosed with MS in 1937, she was frustrated. She wanted to learn more about MS but couldn't find information about his condition. She placed an ad in The New York Times to try to find anyone who may have recovered from MS. When she received more than 50 replies from people also hoping to learn more about MS, it became apparent that more information and research were needed. Inspired to make a change, Ms. Lawry and 20 research scientists founded the National MS Society in 1947. What started out as one woman's vision has evolved into an entire movement that has funded research and provided advocacy and information for millions. Read more about her inspirational work to raise public awareness about MS.

Since 1946, the National MS Society has devoted more than half of a billion dollars to support MS research. Today it continues to build public awareness around MS, including the sponsorship of MS Awareness Week on March 8th–14th.

Bike Icon

Move it during MS Awareness Week.
How will you move it? Take a moment to learn more about MS Awareness Week and the events happening in your area. Sign up to participate in Walk MSSM or Bike MS, advocate for people living with MS, volunteer or donate. You can even organize your own event!

Day Icon

Make the most of every day.
Living with relapsing MS may present certain challenges, and you may wonder if there are ways to work around or even overcome some of them. We asked David, an MS LifeLines® Ambassador, for his thoughts on the subject. Read our web-only article on how David manages his everyday challenges and how he plans to spend MS Awareness Week. MS LifeLines Ambassadors are sponsored by EMD Serono, Inc. and Pfizer Inc.

Sincerely,

Your friends at MS LifeLines®


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Neutralizing Antibodies to Interferon Beta That Persist Long After Cessation of Therapy for Multiple Sclerosis

February 8, 2010

Objectives To confirm that neutralizing antibodies (NAb) to interferon beta can persist after therapy withdrawal and to evaluate whether persisting NAb are associated with a worse clinical disease course in multiple sclerosis (MS).

Design Retrospective study.

Setting Tertiary referral center in the Netherlands.

Patients A total of 71 patients with relapsing-remitting multiple sclerosis treated with interferon beta in the past.

Main Outcome Measures Persisting NAb after therapy withdrawal were tested using the cytopathic effect assay. Patients with and without persisting NAb were compared on several outcomes: the change in annualized relapse rate from prior to interferon beta treatment initiation to after cessation of treatment, time to sustained disability on the Kurtzke Expanded Disability Status Scale, and the use of disease-modifying treatments after cessation of treatment with interferon beta.

Results Seventeen of 71 patients (24%) tested NAb positive after a median interval of 25 months (interquartile range, 10-51 months) after interferon beta treatment cessation. Eleven of these 17 patients (15%) were high-titer NAb positive (>150 10-fold reduction units per mL). Persisting NAb were associated with an increase in the annualized relapse rate (P = .04) and a reduction in time to reach a sustained Expanded Disability Status Scale score of 6.0, ie, the need for unilateral assistance to walk 100 m (P = .02). Moreover, NAb-positive patients were treated with second-line therapy significantly more often, especially mitoxantrone (P = .006).

Conclusion Anti–interferon beta NAb can persist after interferon beta treatment withdrawal and are associated with overt clinical disease activity. This is made apparentby an increase in relapse rate and faster disability progression and is supported by the observed need for more aggressive therapy after interferon beta treatment cessation. Prospective studies are warranted to confirm these results.


READ Complete article from :Archives of Neurology (click)

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Tuesday, February 9, 2010

SHE learned she had multiple sclerosis nearly 12 years ago. Her husband Tom stands by her - In sickness and in health ...

article provided to me by Bobbie V.

From CNN
STORY HIGHLIGHTS
  • Tom and Vera Forkner, married for more than 30 years, learned of Vera's MS 12 years ago
  • Vera's change in mobility changed their relationship because they can't go out on adventures
  • Research shows women did not fare well in marriage if they were the sick partner

  • (CNN) -- Tom and Vera Forkner have loved each other for more than 30 years."As you can imagine, it's been everything," Vera said as Tom laughed.
  • "It's been up and down; it's been smooth; it's been rocky. We've been through a lot together," she said, smiling.Including Vera's multiple sclerosis diagnosis almost 12 years ago.
  • "The first thing was just fear, because we didn't know what was going on...fear, concern and worry for Vera," explained Tom.Vera says it was like a death in the family.
  • "It was like the death of a loved one. I'd get up every morning and the first thought was, I have MS," explained Vera.
  • For the first four or five years her disease was fairly stable and their lives seemed almost normal. Vera, who was in her early 40s, was taking a MS drug that kept her disease under control.



Click here to continue reading and watch a video from this CNN report

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Star skier Jimmie Heuga dies - He helped thousands with MS to live their lives

Vail Daily

Heuga's Vail Valley-based organization has helped thousands with multiple sclerosis live active lives

Jimmie Heuga, the American skier who won a bronze medal in the 1964 Olympics and later used his battle with multiple sclerosis to help other people diagnosed with that disease, died Monday.

He was 66.

In 1984, Heuga founded the Vail Valley-based Jimmie Heuga Center, which sought to encourage people with multiple sclerosis to adopt healthy lifestyles and positive attitudes. The group is now called Can Do Multiple Sclerosis.

Continue reading

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Multiple Sclerosis Experts Join Biogen Idec's Research and Development Team

CAMBRIDGE, Mass., Feb 08, 2010 (BUSINESS WIRE) -- Biogen Idec a global biotechnology leader in the discovery, development, manufacturing and commercialization of innovative therapies, today announced that John R. Richert, M.D., will be joining the Company as a Senior Fellow in Neurology Research and Development and Nancy D. Richert, M.D., Ph.D., will be joining as a Fellow in Neurology Research and Development.

"We are extremely excited to add these two very distinguished leaders in the multiple sclerosis community to the Biogen Idec team," said Alfred Sandrock, M.D., Ph.D., Senior Vice President, Neurology Research and Development. "Drs. John and Nancy Richert have a wealth of experience in MS treatment and research, which will help shape our drug development strategies and further enhance our abilities to bring to market innovative therapies that improve patients' lives."

"I've spent my professional life working on advancing the treatment of multiple sclerosis and am thrilled to be joining the talented and dedicated team at Biogen Idec," said Dr. John Richert. "Biogen Idec is a leader in the treatment of multiple sclerosis, and I look forward to working with the Company to further their research for this debilitating disease."

"Neuroimaging is a rapidly advancing discipline that has become an indispensable tool in the diagnosis and treatment of multiple sclerosis and other neurological disorders," said Dr. Nancy Richert. "I'm excited to apply my expertise to help Biogen Idec further its mission of developing life-saving and life-altering therapies for patients with multiple sclerosis, Alzheimer's, Parkinson's and other serious neurological diseases."

Dr. John Richert joins Biogen Idec from the National Multiple Sclerosis Society (NMSS), where he served as executive vice president for Research and Clinical Programs for the past five years.

Continue reading

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My Friend, "The Wheelchair Kamikaze" needs your vote

Wheelchair Kamikaze was nominated in a "Best Patient’s Blog" award contest being run by medgadget.com.

Incredibly it's become a two-way race between his MS blog and a type I diabetes blog.

You can help him, by voting for him.

If you have never seen his videos, visit my blog and scroll to the light green section on the lower right as well as the boxed section near to the bottom.


The voting ends this Sunday, so please be sure to vote now, by visiting his blog where there is an image to click on, or vote directly at the medgadget.com site: http://medgadget.com/2009bestpatient.html

BTW, I should have some new Wheelchair Kamikaze videos coming soon, or as soon as Marc send them to me.



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Oral drugs to treat multiple sclerosis could become available in 2011

Information provided by Odalys in Miami:

with regards to Oral Cladribine and Fingolimod

Oral drugs to treat multiple sclerosis could become available in 2011 after promising results in two trials.

Drug licences have been applied for and the MS Society said it was "great news" for people with MS - current treatments involve injections or infusions.

The trials of the drugs each involved 1,000 people in over 18 countries, the New England Journal of Medicine says.

Cladribine and fingolimod, which come as tablets, cut relapse rates by 50-60% over two years compared with placebos.

Fingolimod was also tested against the widely used injection, beta interferon 1a. The trial showed the new drug was twice as effective in reducing the number of relapses over a year.

Multiple sclerosis is the most common disabling neurological disorder affecting young adults. It affects more than 100,000 people in the UK and 2.5 million worldwide.

Symptoms include mobility problems, lack of bladder and bowel control and and blurred vision.

The downside of current treatments is that they have to be injected or given by infusion.

MS sufferers have long hoped a pill would be developed. Pharmaceutical companies have been competing to get there first.

READ Complete article from BBC News

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Monday, February 8, 2010

New Study Finds Specialized Support Programs Can Increase Treatment Adherence and Persistence, Reduce Relapses for People with Multiple Sclerosis

  • Study Patients Also Reported Improved Ability to Manage Their Health
  • Support Programs May Yield Cost Savings

Press Release Source: UnitedHealth Group On Monday February 8, 2010, 10:00 am EST

IRVINE, Calif.--(BUSINESS WIRE)--A new study reveals that multiple sclerosis (MS) patients enrolled in a seven-month disease therapy management (DTM) program show greater adherence to injectable MS medications and treatment persistence than patients who receive injectable MS medications through a community pharmacy.

In addition, the percentage of DTM patients who reported an MS relapse decreased by more than a third at the end of the program. These findings provide important insights into the benefits that DTM programs provide in helping patients better manage their health, while also yielding potential cost savings.

The study, published today in the American Journal of Managed Care, was conducted by Prescription Solutions, a leading pharmacy benefits management organization and a UnitedHealth Group company.

Continue Reading

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Multiple Sclerosis: Blacks Have More Severe Symptoms, Decline Faster Than Whites, New Study Shows

February 8, 2010

Fewer African Americans than Caucasians develop multiple sclerosis (MS), statistics show, but their disease progresses more rapidly, and they don't respond as well to therapies, a new study by neurology researchers at the University at Buffalo has found.

Magnetic resonance images (MRI) of a cohort of 567 consecutive MS patients showed that blacks with MS had more damage to brain tissue and had less normal white and gray matter compared to whites with the disease.

Results of the study were published ahead of print on Jan. 20 at
http://www.neurology.org and appear in the Feb. 16 issue of the journal Neurology.

Bianca Weinstock-Guttman, MD, UB associate professor of neurology in the UB School of Medicine and Biomedical Sciences, is first author on the study. Weinstock-Guttman directs the Baird Multiple Sclerosis Center in Kaleida Health's Buffalo General Hospital.

"Black patients showed more brain tissue damage and accumulated brain lesions faster than whites, along with rapid clinical deterioration," confirms Weinstock-Guttman. "The results provide further support that black patients experience a more severe disease, calling for individualized therapeutic interventions for this group of MS patients."


Continue to read from Medical News today
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Research on the Blood-Brain Barrier in MS

What is the blood-brain-barrier?

The blood-brain barrier (BBB) is a specialized structure formed by the blood vessels of the central nervous system (CNS) that regulates the movement of molecules and ions between the blood and the brain.

The blood vessels in the brain are different from everywhere else. Our circulatory system sends oxygen and other nutrients to every tissue of our body through our blood and blood vessels.

In most tissues the blood vessels are leaky or permeable in order to let the oxygen and nutrients into the tissue. However in the CNS (the brain, spinal cord and retina) the blood vessels form a tight barrier to protect the brain from any toxic chemicals or infectious agents that might damage it. In fact if you inject blue dye into the blood stream the dye will penetrate all tissues except the brain.

CLICK HERE to read complete article from the Myelin Repair Foundation's Blog

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