After opening with a cocktail reception the night before, the FightSMA Annual Conference hosted a full day of researcher presentations on Monday at the L’Enfant Plaza Hotel in Washington, D.C. FightSMA Science Director Dr. Christian Lorson kicked off the day at 8 o’clock in the morning with a review of the basic science of spinal muscular atrophy (SMA). This was followed by eleven scientists who represented the United States, Canada, Germany, Italy, the National Institutes of Health, university researchers, and private sector biotechnology corporations. With the contributions of the additional scientists and researchers in the audience, this diverse group openly discussed published and unpublished research, recent successes and failures, and novel tactics in the fight against SMA. The energy of the room was evident as the attendees looked towards the second day of presentations on Tuesday.

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 to attend the twelfth Fight SMA Annual Spinal Muscular Atrophy 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 2007 Annual Conference web page.