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the country and often the world come together year after year to share new discoveries and developments, some even unpublished, with these eager families and friends whose lives have been affected by Spinal Muscular Atrophy.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.

Our bill provides federal funds to expand and unify the existing SMA clinical trial sites, and establish a national clinical trials network.  The legislation also encourages cross-institute collaboration at the National Institutes of Health, as well as raise public awareness.

As work continues to build support for our bill, trailblazing individuals in the SMA community are looking for new, creative ways to gain momentum in Washington.  For example, the Gwendolyn Strong Foundation heads the PetitionToCureSMA.com, providing data that demonstrates to Members the tremendous amount of support in each district.  Additionally, the SMA community is beginning to harness the power of social media, like Twitter, Facebook, and SMASpace, to spread the word about this deadly disease and how just about anyone can get involved with the success of this legislation.

FightSMA and the rest of the SMA community continues to fight for a victory in Congress—gaining new cosponsors weekly, more signatures on the petition daily, and more people using Social Media Advocacy for Spinal Muscular Atrophy (SMA for SMA) every minute.

If you would like to learn more information about Spinal Muscular Atrophy or the SMA Treatment Acceleration Act please visit www.fightsma.org , on Twitter @fightsma, or email Caroline Gibson, Public Affairs Coordinator at carolinegibson@fightsma.com   What we’re learning and experiencing on Capitol Hill can be useful for any disease effort.  Please also visit www.fightermom.org/   the FightSMA women’s empowerment program for any mom whose child is fighting any disease or disorder.