Update: SMA Families and Researchers Gather for Fight SMA Spinal Muscular Atrophy Conference

April 20, 2007 - PRLog -- Note the updated information in the third graph about the collaborative effort between Fight SMA, Families of SMA and the SMA Foundation in developing the proposed bill.
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Richmond, Virginia (April 20, 2007) – Families from all over the nation are traveling to the nation’s capital with a goal of advancing the fight against the deadly disease spinal muscular atrophy (SMA).  The families will be in Washington D.C. from April 22-27 at the L'Enfant Plaza Hotel to attend the twelfth Fight SMA Annual Conference, "The Good Fight," where they will learn about the disease, network with researchers and other SMA families, and work toward legislation to assist in finding a cure for spinal muscular atrophy.

Spinal muscular atrophy is an incurable neuromuscular disorder that kills more infants than any other genetic disease.  SMA affects the motor neurons of the spinal cord and brain stem, rendering them unable to communicate with muscle cells properly.  The National Institute of Neurological Disease and Stroke (NINDS) of The National Institutes of Health (NIH) says, however, that out of the 600 disorders it tracks, SMA is one of the closest to being cured.  Fight SMA is an international nonprofit organization dedicated to accelerating that cure.

Many of the families in attendance will meet with their Senators and Representatives to urge them to support the creation of the first spinal muscular atrophy legislation in our country’s history.  The proposed SMA Treatment Acceleration Act, developed through a collaborative effort between Fight SMA, the SMA Foundation, and Families of SMA, would establish a national clinical trials network to develop treatments that are safe and effective for SMA patients.

“The conference attendees are able to explain better than anyone why the fight against spinal muscular atrophy is so critical,” said Fight SMA President Martha Slay.  “We know these meetings with members of Congress will put a face on this horrible disease.“

Attendees will also have the opportunity to receive updates on research into the disease from scientists from all over the world, gain valuable and practical advice from clinicians for coping with a childhood disease on a daily basis.

For more information on the conference, please visit the Fight SMA Annual Conference web page, at http://www.fightsma.org/index.php?annual_meeting_2007.

About Fight SMA
Headquartered in Richmond, Virginia, Fight SMA (also known as Andrew's Buddies) is an international nonprofit group dedicated to accelerating research for a treatment or a cure for spinal muscular atrophy (SMA), a neuromuscular disorder that kills more babies than any other genetic disease.  For more information on spinal muscular atrophy and Fight SMA, please visit http://www.fightsma.org.  The latest SMA news and research information is available at the Spinal Muscular Atrophy Blog, at http://www.fightsma.org/blog.

Website: www.fightsma.org