The following release was published by FightSMA on February 5, 2013:
ALEXANDRIA, VA (February 5, 2013) – FightSMA, an international non-profit organization working toward a treatment or cure for spinal muscular atrophy (SMA), is thanking and congratulating the champions of a bill that gives hope to families across the country. The National Pediatric Research Network Act (NPRNA) of 2013, developed in part by FightSMA, passed the U.S. House of Representatives last night with broad bipartisan support. It authorizes the National Institutes of Health (NIH) to support the creation of up to 20 pediatric research consortia focused on diseases such as SMA.
The National Pediatric Research Network Act (NPRNA) of 2013 promises to directly benefit the fight against SMA by supporting collaborative pediatric research including multi-site clinical trials for rare pediatric disorders like SMA.
“I am thrilled that the House has once again come together in a bipartisan fashion to pass this critical legislation,” said Martha Slay, cofounder and past president of FightSMA. “The NPRNA will increase vital research and benefit millions of families living with rare pediatric diseases, including spinal muscular atrophy. While we recognize that we have a lot of work left to do, this action is a momentous first step. FightSMA is encouraging our families and supporters to now reach out to their senators and ask for quick Senate passage.”
Credit for the successful passage must be given to the bill’s supporters, including its lead sponsors, Reps. Lois Capps (D-CA) and Cathy McMorris Rodgers (R-WA).
“The National Pediatric Research Network Act would go a long way to increasing and improving research of childhood illnesses–especially rare and complex diseases–and developing new treatments to fight them,” said Congresswoman Capps. “Every parent’s worst fear is that their child becomes sick, and we owe it to every parent in America to do what we can to fight childhood illnesses. As we have seen right here on the Central Coast, too many families are struggling with chronic and debilitating childhood diseases. The National Pediatric Research Network Act represents a federal commitment toward developing important treatments and cures to help their children thrive.”
“As a mother, I am reminded on a daily basis of the importance of our children’s health – and for that reason, I am proud the House has passed the National Pediatric Research Network Act of 2013 – so we can build upon our nation’s commitment to pediatric medical research,” said Chair McMorris Rodgers. “Too often, research into pediatric disorders has lagged behind research into other medical conditions. The time has come to take pediatric research to the next level, and this bill will do just that. It will give new hope to millions of children – and their families – in this country.”
In addition to the bill’s lead sponsors, FightSMA thanks House Energy and Commerce Committee Chairman Fred Upton (R-MI) and House Majority Leader Eric Cantor (R-VA) for their support.The legislative focus now moves to the Senate, where a companion bill is expected to be introduced in the coming weeks by Sens. Sherrod Brown (D-OH) and Roger Wicker (R-MS).
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.