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FightSMA Announces Passage of National Pediatric Research Network Act by U.S. House of Representatives

Washington, DC (PRWEB) November 13, 2013

National legislation to advance spinal muscular atrophy research took a giant leap forward on Tuesday, Nov. 12, 2013 with the passage by the U.S. House of Representatives of the National Pediatric Research Network Act (NPRNA).

The NPRNA has been supported by a coalition of health-related organizations that includes FightSMA ( The bill, which was part of a package of health-related bills, has now arrived in the U.S. Senate, where a request has been made by Senate leadership to approve it by unanimous consent. After a period of review by all members, this process may lead to the bill’s passage in the coming days.

"We are absolutely thrilled that the NPRNA has cleared this significant hurdle," said Martha Slay, a founder of FightSMA. "We had much help from many, many families across the country, as well as the early and continuing support of Congressman Eric Cantor."

"Our special thanks go out to Rep. Fred Upton, (R-MI), Chair of the House Energy and Commerce Committee; Rep. Lois Capps (D-CA); and Rep. Cathy McMorris Rodgers (R-WA)."

"This bill will increase coordination and improve pediatric research – especially research of rare and complex diseases – while developing new treatments to fight them," said Congresswoman Capps. "Children have unique health care experiences, treatment needs, and research challenges; and while public and private research has come a long way on pediatric diseases over the years, we know that we are still far behind on important diagnostics, cures, and treatments for far too many ailing children. We see the importance in legislation like this right here at home, where our neighbors Bill and Victoria Strong work every day to make their daughter Gwendolyn’s life a little better as she grows up with SMA. We owe it to the Strongs and to every parent to do what we can to find treatments and cures for illnesses in children."

Rep. McMorris Rodgers, who co-sponsored the NPRNA with Rep. Capps, said, "The National Pediatric Research Network Act will authorize the establishment of a well proven, and evidence-based approach for addressing pediatric research. It will enable the National Institutes of Health (NIH) to support multi-institute research to coordinate and streamline this important research. Most importantly, it will help to speed cures to the youngest patients."

About FightSMA

FightSMA is an international nonprofit 501c3 created in 1991 to strategically accelerate a treatment for spinal muscular atrophy (SMA), the leading genetic cause of infant death. FightSMA has awarded research grants to more than 40 universities and research institutions in the United States, Canada, the United Kingdom, France, and Italy. In 2013, FightSMA launched the groundbreaking "Emerging Investigators Awards" program to recruit promising, young researchers into the SMA research field.

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