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On November 27, 2013, President Obama signed into law the National Pediatric Research Network Act (NPRNA), marking the successful conclusion of a legislative campaign waged by PSW client FightSMA to increase the federal commitment to research of rare pediatric disorders. FightSMA, a national nonprofit organization of pediatric health advocates, financially backs scientific research including clinical trials aimed at finding a treatment for spinal muscular atrophy, the number one genetic killer of children under the age of two.

FightSMA’s legislative journey reaches back seven years, when it teamed up with Congressmen Eric Cantor (R-VA) and Patrick Kennedy (D-RI) to introduce the SMA Treatment Acceleration Act in 2007. The Act provided federal support for expanded SMA studies and clinical research. Despite gaining 125 Republican and Democratic cosponsors, the legislation was never given a vote in Congress.

Recognizing the need to adapt to the changing political atmosphere in Congress, PSW and FightSMA joined forces in 2010 with the Coalition for Pediatric Medical Research, a coalition of children’s hospitals, to craft the NPRNA, a broad pediatric research bill which called for the creation of a collaborative research network to combat the most devastating pediatric disorders. Transcending party lines, the NPRNA was introduced by Reps. Lois Capps (D-CA) and Cathy McMorris Rodgers (R-WA), with strong support from Majority Leader Cantor, House Energy and Commerce Chairman Fred Upton (R-MI) and Ranking Member Henry Waxman (D-CA). It quickly gathered support and was passed by the House of Representatives in late 2012, but ultimately ran out of time for Senate consideration before the 112th Congress came to a close.

Undeterred, the congressional coalition FightSMA helped build in the House immediately reintroduced the NPRNA at the beginning of the 113th Congress. Once again, the NPRNA was approved by an overwhelming margin. FightSMA’s first-class grassroots campaign turned its focus on the Senate and worked nonstop with its lead sponsors, Sens. Sherrod Brown (D-OH) and Roger Wicker (R-MS), to rally support for the NPRNA. FightSMA’s efforts paid off last month when the Senate, with crucial backing from HELP Committee Chairman Tom Harkin (D-IA) and Ranking Member Lamar Alexander (R-TN), passed the NPRNA as part of the larger PREEMIE Reauthorization Act (S.252) approved by the House just days earlier.

Throughout the legislative campaign to pass substantive pediatric health reforms, FightSMA and PSW focused on building and maintaining strong bipartisan support on Capitol Hill through the use of grassroots campaigning and private sector coalition-building. The net result of those efforts is a law that will positively impact thousands of children and families across the nation. PSW is proud to have partnered with FightSMA on this pivotal legislative victory.


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