How YOU Can Help? - NPRNA in the Senate!

FightSMA has provided a sample letter and talking points for a phone call to your US Senator’s office. Please read their press September 20, 2012 release below: 

“FightSMA’s legislative efforts in Washington have taken another important step forward. Senate Bill 3461, the Senate companion to the House of Representatives’ National Pediatric Research Network Act (H.R. 6163), was introduced last evening by Senators Sherrod Brown (D-OH) and Roger Wicker (R-MS). Like the House version introduced July 19, the Senate bill directs the National Institutes of Health to support the formation of pediatric research consortia and calls for a number of these consortia to focus on conducting multisite clinical trials and translational research on rare pediatric disorders, with a specific mention of SMA.

The effort to build support for the bill is underway, with Senators John Kerry (D-MA), Mark Begich (D-AK), Sheldon Whitehouse (D-RI) and Richard Blumenthal (D-CT) already signing on as cosponsors. FightSMA will be working throughout the August congressional recess with members and staff of the Senate Committee on Health, Education, Labor and Pensions (HELP) to press for committee consideration of the bill and seek additional cosponsorship. Similarly, we will continue our legislative push in the House alongside our two sponsors, Reps. Cathy McMorris-Rodgers (R-WA) and Lois Capps (D-CA).”


Please send a letter and/or call your US Senator’s office and ask them to co sponsor NPRNA because SMA and all pediatric rare diseases matter!  

Click HERE for your Senator’s contact information. 


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.



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]

- FightSMA press release dated September 21, 2012.