S. 424: A bill to amend title IV of the Public Health Service Act to provide for a National Pediatric Research Network, including with respect to pediatric rare diseases or conditions.

We are so excited to share that NPRNA now has an official bill # after being introduced in the Senate!

S. 424

This bill was assigned to a congressional committee on February 28, 2013 (Rare Disease Day!), which will consider it before possibly sending it on to the House or Senate as a whole.

FightSMA wrote in a press release: 

Introducing the NPRNA on Rare Disease Day on Capitol Hill, Senators Sherrod Brown (D-OH) and Roger Wicker (R-MS) continue their leadership from the 112th Congress by once again serving as the bill’s lead sponsors. Joining them as original cosponsors will be Senators Richard Blumenthal (D-CT), Roy Blunt (R-MO), Susan Collins (R-ME), Rob Portman (R-OH) and Sheldon Whitehouse (D-RI). The NPRNA will now be referred to the Senate Health, Education, Labor and Pensions (HELP) committee, where it is expected to be considered by committee members in the coming weeks.

Now — on to the Senate and from there to desk of the President of the United States!

As this critical legislation is considered in the Senate, FightSMA needs your help. A phone call, letter or email to your senators can make all the difference.

Please help us build this critical support in the Senate by writing your Senator through their website and also phoning the Capitol Hill office. You can copy and paste the draft letter below for email or fax.  We’ve also listed talking points. Here’s a link that could be helpful:http://www.senate.gov/general/contact_information/senators_cfm.cfm .  When you write or call, we strongly encourage you to mention your family’s story and experience with SMA.

(Letter to be sent via Senator’s website)

Dear Senator ____________,


Here in [STATE], I’ve had the privilege to be involved with FightSMA, a non-profit organization of families in our state and across the country working to find a treatment for spinal muscular atrophy (SMA), the leading genetic killer of children under two.  Along with millions of other families living with rare pediatric diseases, I am proud to support S.424, the National Pediatric Research Network Act (NPRNA).  I write you today to ask for your support in passing this critical legislation, which will lead to increased research and enhanced treatments of devastating pediatric diseases.

The NPRNA was introduced in the U.S. Senate on February 28, 2013, by Senators Sherrod Brown (D-OH) and Roger Wicker (R-MS).  The bipartisan coalition of original cosponsors includes Senators Richard Blumenthal (D-CT), Roy Blunt (R-MO), Susan Collins (R-ME), Rob Portman (R-OH) and Sheldon Whitehouse (D-RI).  Senate introduction of the NPRNA comes just weeks after the House of Representatives passed the NPRNA by an overwhelming 375-27 bipartisan vote, thanks to the leadership of Reps. Lois Capps (D-CA), Cathy McMorris Rodgers (R-WA), Fred Upton (R-MI) and Eric Cantor (R-VA).
My family and others in [STATE] are thrilled that the Senate will begin consideration of the NPRNA and we anticipate that the legislation will receive additional broad bipartisan support as it advances.  For more information on the bill, please feel free to contact Valarie Molaison in Sen. Brown’s office (Valarie_Molaison@brown.senate.gov) or Sarah Lloyd Allred in Sen. Wicker’s office (SarahLloyd_Allred@wicker.senate.gov). 
Thank you very much for your consideration.  Your support would mean the world to [STATE] families, and we are ready to do whatever it takes to help move this provision across the finish line.




(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 of 2013 (S. 424/H.R. 225)
  • 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.
  • Mention your family’s story and experience with SMA.
  • The Senator’s co sponsorship of NPRNA would mean the world to me and other families across STATE
  • Thank you for your consideration!

Many thanks for all that you have done to make this happen.

The National Pediatric Research Network Act of 2013 (H.R. 225) Passes The House!

“House Overwhelmingly Approves Bipartisan Committee Legislation to Support Pediatric Health Care.”

WATCH: Chairman Fred Upton on the House floor. He mentions meeting with our family and our little princesses, “Sleeping Beauty and Cinderella.” We are so thankful for his support!

The bipartisan National Pediatric Research Network Act (H.R. 225), authored by Reps. Lois Capps (D-CA) and Cathy McMorris Rodgers (R-WA), would allow NIH to fund pediatric research networks comprised of a consortia of institutions that will cooperate in conducting research on conditions and diseases, such as Spinal Muscular Atrophy, affecting children. H.R. 225 was approved by a vote of 375 to 27.

H.R. 225, National Pediatric Research Network Act of 2013 PASSES markup by unanimous consent.

Tuesday, January 22, 2013 - 10:00am

The House Energy and Commerce Committee’s Health Subcommittee for the 113th Congress passed H.R. 225 -  the National Pediatric Research Network Act of 2013.  Spinal muscular atrophy (SMA) was singled out as one of the rare pediatric disorders for which this bill will impact.

H.R. 225, National Pediatric Research Network Act of 2013 passes mark up by unanimous consent.

Watch the video here:


H.R. 225: National Pediatric Research Network Act of 2013

Sadly, the National Pediatric Research Network Act (S.3461 / H.R. 6163) did not pass in the 112th Congress.

With that news, we are SO thankful to know that on January 14th, 2013 Congresswomen Lois Capps (CA) re-introduced the National Pediatric Research Network Act (H.R.225) in the United States House of Representatives.  This bipartisan legislation will create a national network focused on accelerating clinical trials for pediatric rare diseases, including SMA.

We are so hopeful it will pass in this 113th Congress!!

Track it with us!

GovTrack: http://www.govtrack.us/congress/bills/113/hr225/text

The Library of Congress: http://thomas.loc.gov/cgi-bin/bdquery/z?d113:HR00225:@@@X