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Take Action for SMA. Help Pass NPRNA!

September 22, 2012 by Victoria Strong
Take Action for SMA. Help Pass NPRNA!

We are so excited that this week the bipartisan National Pediatric Research Network Act (NPRNA) unanimously passed the United States House of Representatives! This is a bill we have been intimately involved with from the start, working directly and closely with FightSMA, the SMA leaders in Washington, and our own Santa Barbara Representative Lois Capps. In fact, Representative Capps co-authored NPRNA, introduced it into Congress, and spoke about Gwendolyn on the floor of Congress when it passed the Health Subcommittee and during its passage from the full House. (See videos below.) Honored!

Anyone who has been following us over the last several years knows legislation has been one of our great passions since Gwendolyn was diagnosed with SMA. At that time a different bill was making its way through both the House and Senate and we helped by garnering over 100,000 signatures in its support. Even with so much great work and a lot of successes, that bill never got as far as we are today. Legislation directly impacting the fight against spinal muscular atrophy has never before experienced this level of success in Congress!

So now is the time -- WE NEED YOUR HELP. Please take 2 minutes to let your Senator know they should support this bill because SMA and all pediatric rare diseases matter! Click HERE for your Senator's contact information. SAMPLE LETTER >>

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Dear Senator [NAME]:

On behalf of families like mine across [STATE] who are working to find a treatment for spinal muscular atrophy (SMA), I write to urge you to cosponsor the National Pediatric Research Network Act (S.3461 / H.R. 6163). The House of Representatives passed this important legislation with broad bi-partisan support on Wednesday, September 19th thanks to the leadership of Reps. McMorris Rodgers (WA) and Capps (CA). NPRNA will benefit a broad array of pediatric diseases by promoting cooperation among multiple institutions and advancing the development of new therapies while making more efficient use of scarce research dollars.

SMA is the leading genetic killer of children under the age of two. It destroys motor neurons, which regulate voluntary muscle movements such as crawling, walking, head and neck control, swallowing and breathing. Research funding for this devastating disease over the past two decades has primarily come from private organizations, bringing several life-changing therapies to the doorstep of the clinic. To address the significant challenges of implementing national clinical trials for SMA and so many other diseases, a bipartisan group of senators, led by Sherrod Brown (D-OH) and Roger Wicker (R-MS), developed the NPRNA. We are proud that our list of cosponsors continues to grow and now includes Senators Grassley (IA), Blunt (MO). Whitehouse (RI), Begich (AK) Blumenthal(CT) and Kerry (MA).

This bill would strengthen the federal investment in pediatric research by supporting infrastructure and core services needed to support translational and clinical research for a broad array of rare pediatric disorders. The NPRNA would authorize NIH to establish up to 20 pediatric research consortia throughout the nation which will be required to communicate regularly with one another in order to promote collaboration and resource sharing.

We have made tremendous progress in advancing this legislation. As the bill comes before the Senate, your cosponsorship of this bill would mean the world to families like mine across [STATE]. Thank you so much for your consideration.

Sincerely,

[YOUR NAME]

OR (Talking Points for phone call)

  • I am a constituent of Senator [NAME]
  • I am phoning today to urge Senator [NAME] to cosponsor the National Pediatric Research Network Act (S.3461/H.R. 6163)
  • This legislation will benefit SMA and other rare diseases.
  • There are nearly 7,000 rare diseases affecting 25 to 30 million people most of whom are children.
  • The Senator’s co sponsorship of NPRNA would mean the world to me and other families across [STATE]
  • THANK YOU FOR OUR CONSIDERATION

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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 Cathy 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 >> Representative Capps introducing NPRNA in Congress on September 11th, 2012

C-SPAN video of Representative Capps talking about Gwendolyn just before the House unanimously passed NPRNA on September 19th, 2012.

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