FightSMA continues to press for enactment of S.424/H.R.225, the National Pediatric Research Network Act (NPRNA), bipartisan legislation to support collaborative pediatric research including multi-site clinical trials for rare pediatric disorders like SMA.
Now that the bill has passed the U.S. House of Representatives, we are working with our Senate sponsors, Senators Sherrod Brown (D-OH) and Roger Wicker (R-MS), and a number of allied organizations to advance S.424 in the Senate Health, Education, Labor and Pensions (HELP) Committee. Along with the Coalition for Pediatric Medical Research (CPMR), a group of more than 20 children’s hospitals around the country, we have held several very positive meetings with HELP committee staff on both sides of the aisle.
FightSMA scientists visited with health staff for numerous Senate HELP committee members during our annual research conference in April, and CPMR scientists provided a briefing for committee staff on May 7 to discuss the benefits of collaborative research networks. We are proud to report that, with your help, committee members Johnny Isakson (R-GA) and Orrin Hatch (R-UT) have signed on to the bill, joining original cosponsor and fellow committee member Sheldon Whitehouse (D-RI).
Our goal now is to build additional support for the bill among Republican HELP committee members in order to position the NPRNA for a committee markup and approval in the near future. FightSMA needs your help in this effort.
A phone call, letter or email to the following Senators can make all the difference:
Lamar Alexander (Tennessee)
Michael Enzi (Wyoming)
Richard Burr (North Carolina)
Rand Paul (Kentucky)
Pat Roberts (Kansas)
Lisa Murkowski (Alaska)
Mark Kirk (Illinois)
Tim Scott (South Carolina)
If you or anyone you know lives or works in the above states please make your voice heard and encourage others to do the same! The support of families across the country has brought legislation to benefit SMA clinical trials closer to the president’s desk than it has ever been. With your help, we can push the NPRNA over the finish line!