In a major step forward for the advancement of clinical research for SMA and other pediatric disorders, the National Pediatric Research Network Act (NPRNA), was reintroduced today in the U.S. Senate. The legislation’s introduction comes just weeks after a bipartisan companion bill (H.R.225) passed the House of Representatives by an overwhelming margin.

Introducing the NPRNA on Rare Disease Day on Capitol Hill, 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. FightSMA and the Gwendolyn Strong Foundation, two of the bills’ endorsing organizations, are tremendously grateful to Senators Brown and Wicker and all of our supporters in the Senate for their tireless efforts, which give hope to thousands of families across the nation.

As this critical legislation is considered in the Senate, FightSMA needs your help. A phone call, letter or email to your senators can make all the difference. Your work during the 112th Congress brought the legislation closer to the president’s desk than it has ever been. With your help, we can push the NPRNA over the finish line!

Thank you so much for all that you do.

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).

About FightSMA
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.