Legislation would assist with finding a cure for rare diseases, including Spinal Muscular Atrophy (SMA)
FightSMA: Accelerating a cure for spinal muscular atrophy (SMA)
Online PR News – 21-September-2012 –Legislation to authorize the National Institutes of Health (NIH) to support the creation of up to 20 pediatric research consortia focused on diseases such as spinal muscular atrophy (SMA) passed the U.S. House of Representatives on Wednesday with broad bipartisan support.
The National Pediatric Research Network Act (NPRNA) 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 could not be more delighted with the House passage of the National Pediatric Research Network Act, and I know that this news will give hope to thousands of families across the nation affected by SMA,” said Martha Slay, founder and past president of FightSMA. “While we still have work to do to push this legislation across the finish line, the NPRNA’s passage in the House is a testament to the determination of all those who have labored so hard to build support in the Congress for this crucial legislation.”
Many thanks and much credit for the successful passage must be given to the bill’s supporters, including its lead sponsors, Reps. Cathy McMorris Rodgers (WA), Lois Capps (CA) and Diana DeGette (CO), said Ms. Slay.
“While partisanship may dominate the headlines, House passage of the National Pediatric Research Network Act is a great example of how we can get things done, and work together to improve children’s health,” said Ms. Capps. “The bill would go a long way to increasing and improving research on children’s illnesses–especially rare and complex diseases–and developing new treatments to fight them. 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. I am hopeful that our bill can be signed into law by the President before the end of the year.”
“As the mom of a child with special needs, I am thrilled the House has passed our bill to increase pediatric disorder research and the quality of that research. 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. Our bill will do that by creating research networks focused on pediatric diseases, giving new hope to the millions who suffer from those conditions and their families,” said Ms. McMorris Rodgers.
In addition to the sponsors, special thanks must be given to House Energy and Commerce Committee Chair Fred Upton of Michigan and House Majority Leader Eric Cantor of Virginia.
"The National Pediatric Research Network Act will modernize pediatric research programs at the National Institutes of Health, especially for rare and pediatric diseases such as spinal muscular atrophy,” said Mr. Cantor. “FightSMA, and the families that help this organization search for a cure, were instrumental in advancing this important legislation, especially a proud Virginian, Martha Slay. I will continue to encourage my colleagues in the Senate to follow our lead, and help these families and their noble cause."
The legislative focus now moves to the Senate, where an identical companion bill (S.3461) is gaining support from a bipartisan group of senators, led by Sens. Sherrod Brown (OH) and Roger Wicker (MS). FightSMA continues to work to grow the number of bipartisan cosponsors in the Senate and reach final passage after the November elections.
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, please visit http://www.fightsma.org.