FightSMA Hails Reintroduction of National Pediatric Research Network Act (NPRNA) in the U.S. Senate
(Alexandria, Virginia) — FightSMA, an international non-profit organization with a goal of finding a treatment or cure for Spinal Muscular Atrophy, today thanked the sponsors and champions of the National Pediatric Research Network Act (NPRNA) of 2013 (S.424), who reintroduced the bill in the U.S. Senate last night. The move comes just weeks after a bipartisan companion bill (H.R.225) passed the House of Representatives by an overwhelming margin.
Spinal Muscular Atrophy (SMA) is the leading genetic cause of infant death. FightSMA helped to develop the NPRNA in order to speed development of a cure for SMA and many other pediatric diseases.
“FightSMA and the Gwendolyn Strong Foundation, two of the bill’s endorsing organizations, are tremendously grateful to the sponsors and supporters of the NPRNA in the Senate,” said Martha Slay, co-founder and past president of FightSMA. “This bill gives hope to thousands of families across the nation.”
The bill was reintroduced in the Senate on International Rare Disease Day. 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.
“We’re calling for all SMA families and friends to do what they can to support this legislation,” said Slay. “Your work during the 112th Congress brought the legislation closer to the president’s desk than it has ever been, and a phone call, letter or email to your senators now can make all the difference. With your help, we can push the NPRNA over the finish line!”
FightSMA, an international nonprofit group, was founded in 1991 to accelerate a treatment or cure for spinal muscular atrophy (SMA), the leading genetic cause of infant death. Since its formation, FightSMA has awarded research grants at more than 40 universities and research institutions in the United States, Canada, France, the United Kingdom, and Italy. For more information about FightSMA, visit http://www.fightsma.org.