NORD Hosts "Portraits of Courage Celebration"


It all started three years ago when we met with our Congressman to tell him about two special constituents in his district who have Spinal Muscular Atrophy and also to gain his support for the National Pediatric Research Network Act (NPRNA) - legislation created and championed by Fight SMA. Since then the NPRNA has passed Congress and has been signed into law by the President.

Chairman Fred Upton continues to push for accelerated cures in America by recently unveiling the 21st Century Cures initiative. The Energy and Commerce Committee released a video highlighting the merits of the program and cited the passage of the NPRNA as a model for Congress to use as it considers ways to support medical research in the future. The video can be found at