Exceptional Parent Magazine, a publication for families and professionals in the special needs community, recently posted on their website a piece about the 2009 FightSMA Annual Conference that was held in April this year.

The 2009 FightSMA Annual Conference in Review
Sep 24, 2009

During the 2009 FightSMA Annual Conference the energy was actually palpable! Excitement, camaraderie and a renewed sense of determination pulsed through each of us. The large conference room at the L’Enfant Plaza Hotel in Washington, DC hosted a collection of amazingly dedicated people, sharing the same goal and focus: eradicating Spinal Muscular Atrophy (SMA), the number-one genetic killer of children under the age of two.

Advocates from Utah to New Jersey, from Georgia to New Mexico, gather together each year to join forces, share information, and celebrate their important mission. Researchers from across the country and often the world come together year after year to share new discoveries and developments, some even unpublished, with these eager families and friends whose lives have been affected by Spinal Muscular Atrophy. And, every year we march as one to Capitol Hill, sharing with our nation’s leaders the importance of this little-known, but wicked disease.

The 2009 FightSMA Conference was monumental: the SMA community had a bill in Congress for the first time in history, and they had a specific request for each Senator and Congressman, which was to cosponsor this legislation. The bill, the SMA Treatment Acceleration Act (HR 2149, S 1158), is currently in its second Congress and all of our community has been working tirelessly on a grassroots level to get this legislation passed.

To read the full article, click here. Registration required.