Last night, I stood on the House floor to speak up for children all across this country. I joined my colleague, Rep. Lois Capps (D-CA), to introduce H.R. 6163, the National Pediatric Research Network Act (NPRNA), a bill that will advance research for myriad pediatric disorders – including Down syndrome and spinal muscular atrophy (SMA). After moving swiftly through the Energy and Commerce Health Subcommittee I am proud that our legislation passed with overwhelming bipartisan support in the House last night.
This particular piece of legislation touches my own life in a very meaningful way. Five years ago, my life was changed irrevocably. It was on this day that my husband Brian and I brought a beautiful boy into this world – a boy who is active, engaged, inquisitive and athletic. He dances to Bruce Springsteen, watches football games with his dad, and loves to play on the iPad. He was also born with Down syndrome. And as the mom with a son who has special needs, I am thrilled to have introduced a bill to increase pediatric disorder research and the quality of that research. I know all too well the challenges that come with having a child who has special needs. As soon as Cole was born, the doctors told us that his life would be filled with endless doctor’s visits and medical checkups. Five years later, I can say with certainty that they were right. While Cole has made a tremendous amount of progress since then, I am confident that more research is needed for the advancement of treatments for Down syndrome and other pediatric disorders. And our bill addresses exactly that.
For years, research into pediatric disorders has lagged behind research into other medical conditions. And the time has finally come to take pediatric research to the next level. I’m proud that our bill will accomplish that objective. The legislation will create research networks focused on pediatric diseases, which will give new hope to the millions who suffer from those conditions – and their families. The National Institutes of Health (NIH) currently uses only five percent of its extramural funds on pediatric research. Our legislation will authorize NIH to establish up to 20 pediatric research networks throughout the nation, some of which would focus on rare and genetic diseases, such as SMA, muscular dystrophy, Down syndrome, and Fragile X, which are often very difficult to study because of their low incidence in the population. The NPRNA has been endorsed by the Children’s Hospital Association, the Federation of Pediatric Organizations, Parent Project Muscular Dystrophy, the National Down Syndrome Society, Fight SMA, and other groups. I am hopeful it will pass the Senate and make its way to the President’s desk to be signed into law.
As a member of the Energy and Commerce Health Subcommittee, Co-Chair of the Congressional Disabilities Caucus and Co-Chair of the Congressional Down Syndrome Caucus, I am especially optimistic about the benefits of this legislation. But more important, as a mom, legislation like this gives me hope. It gives me hope that my son Cole – and so many like him – will live to see better and brighter days ahead.
To watch Rep. McMorris Rodgers’s remarks on the House floor, click here.