House Approves Capps Bill Inspired by Santa Barbara Family Fighting Rare Disease

April 2, 2013

The House of Representatives on Monday overwhelmingly approved a bipartisan bill authored by Rep. Lois Capps, D-Santa Barbara, the National Pediatric Research Network Act (House Resolution 225), by a vote of 375-27.

The legislation, which was introduced with Rep. Cathy McMorris Rodgers, R-Wash., would authorize the National Institutes of Health to facilitate the creation of up to 20 pediatric research consortia focused on developing treatments and cures for pediatric diseases, including rare conditions like spinal muscular atrophy.

The bipartisan bill was designed to help increase research coordination and expand the geographic reach of research to more efficiently and effectively investigate pediatric diseases. The National Pediatric Research Network Act passed the House twice in the 112th Congress as both an amendment and a standalone bill, but was not voted on in the Senate.

Capps was first inspired to introduce the National Pediatric Network Research Act after meeting the Strong family of Santa Barbara. Bill and Victoria Strong’s daughter, Gwendolyn, was diagnosed with Spinal Muscular Atrophy (SMA) as an infant.

“The National Pediatric Research Network Act 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,” Capps said. “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,” chair McMorris Rodgers said. “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.”

“We are extremely grateful for the leadership of Representative Lois Capps and the House of Representatives in recognizing the importance of pediatric rare disease research, such as spinal muscular atrophy, and continuing to advocate for the children and families impacted by these complex conditions,” said Bill Strong, co-founder of the Gwendolyn Strong Foundation. “We’ve been working closely with Rep. Capps and FightSMA, the SMA leader on Capitol Hill, on legislation to support clinical trial infrastructure for a number of years, and it is extremely gratifying to see the NPRNA of 2013 move out of the House and one step closer to positively impacting disease research for so many rare pediatric conditions.”

“With Monday’s House passage of the National Pediatric Research Network Act, hope has been given to millions of families facing rare pediatric diseases including spinal muscular atrophy,” said Martha Slay, co-founder of FightSMA. “I am confident that this legislation will result in enhanced pediatric research and, ultimately, the development of life-saving treatments. FightSMA offers our sincerest thanks to Rep. Lois Capps and Rep. Cathy McMorris Rodgers for their tireless dedication to this cause.”

— Ashley Schapitl is press secretary for Rep. Lois Capps, D-Santa Barbara.

Read more at NoozHawk.

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