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National Multiple System Atrophy Letter Writing Day
Date:3/28/2013

Raleigh, NC (PRWEB) March 28, 2013

The Multiple System Atrophy Coalition (formerly the SDS/MSA Support Group) is sponsoring a national letter-writing day for those impacted by multiple system atrophy (MSA). The campaign, which will take place on March 28, will target letters to both houses of Congress and to the President of the United States. The goal is to educate elected officials on the devastating impact of multiple system atrophy on the lives of patients, caregivers and their families, and to ask Congress to:

  •     Join the rare disease caucus
  •     Fight for better funding of the NIH in support of rare disease research
  •     Urge the FDA to more efficiently approve orphan drugs
  •     Recognize March as Multiple System Atrophy Awareness Month and October 3rd as World MSA Day

“MSA is a rare and fatal disorder,” stated Judy Biedenharn, co-President of The MSA Coalition. “There are fewer than 15,000 Americans currently diagnosed with this disease and perhaps another 35,000 have yet to be diagnosed. As such, it is critical that the MSA community band together to make our collective voice heard. We need Congress to support rare disease causes as approximately 7,000 rare diseases affect more than 30 million Americans. Like too many rare diseases, multiple system atrophy has no known cause and a cure is desperately needed.”

“Writing letters to elected officials about multiple system atrophy is a wonderful way to spread awareness and to help ensure our lawmakers keep rare disease research in mind as they pass legislation,” continues Mrs. Biedenharn, whose husband Ned passed away from MSA 10 years ago. “In order to encourage a large number of letters from the MSA community, The MSA Coalition is leveraging online tools available through the Rare Disease Legislative
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