US House Passes National Pediatric Research Network Act (NPRNA)!

We are thrilled to share this exciting news with you!

US Representative Fred Upton showing the Kalamazoo Parent magazine cover picture of Brielle on the House floor asking for support for “The National Pediatric Research Network Act (H.R. 6163). Moments later, the bill was passed! A monumental day for SMA! — at U.S. House of Representatives.

On September 19th, 2012 the (bipartisan) National Pediatric Research Network Act (NPRNA) unanimously passed the United States House of Representatives! This is a bill that would have a direct impact on Spinal Musuclar Atrophy and many other rare diseases. We have worked closely with FightSMA, the SMA leaders in Washington, and our own West Michigan Representative, Chairman Upton! We are so thankful for his dedication to this bill and so honored that Mr. Upton spoke about meeting our family on the floor of Congress during its passage from the full House (see video below). I had happy tears streaming down my face when I watched this live on C-SPAN.  In fact, it gives me happy tears every time I re-watch it on Youtube.  This is such a huge accomplishment and one of the most amazing things to feel like WE ARE making a difference in the fight against SMA!

But we’re not done… next it goes to the Senate, then the President’s desk!!!!!!


We could not agree with TheGSF more:

“This bipartisan legislation would not have happened if it were not for the vision and leadership of FightSMA, without Representative Capps’ dedicated advocacy of SMA and children’s causes, or without the collaboration of Representatives McMorris Rodgers (WA), Diana DeGette (CO), Committee Chair Fred Upton (MI) and House Majority Leader Eric Cantor (VA) — and the families facing SMA and other rare disease across the country who have inspired their legislators.

Now let’s rally together and lend our voices to get NPRNA onto the President’s desk!”  


Watch the C-SPAN video of NPRNA passing the House, September 19th, 2012 on a unanimous voice vote! Representative Upton mentioned Brielle and Brooke in his speech on the House Floor (as “Cinderella” and Sleeping Beauty”).