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  • National Pediatric Research Network Act of 2013

    by Representative Lois Capps

    Posted on 2013-02-04

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    CAPPS. I thank my colleague for yielding.

    Mr. Speaker, I rise in strong support of H.R. 225, the National Pediatric Research Network Act.

    I want to associate myself with the remarks of our committee chairman, Mr. Upton. He has a family dear to his heart, as I have one too; and they reflect families across this country for whom this bill will provide a stronger glimmer of hope for the future.

    This is a bipartisan bill. It will improve research in clinical trials on pediatric diseases, train future pediatric researchers, and disseminate research findings quickly so that all children may benefit.

    It does not replace our current pediatric research investments, but instead builds upon the work already being done at the National Institutes of Health and at so many research centers across the country by creating research consortia to form a nationwide network of pediatric researchers. This is important to make sure that we are always working with the most current science and that this information is quickly shared and verified.

    This bill will also expand the geographic scope of research, giving sick kids easier access to research programs and clinical trials. Moreover, this bill will help a wider variety of institutions participate in this critical research while providing training grounds for our next generation of pediatric researchers.

    Another key feature of this bill is that it will place an added emphasis on researching children's rare diseases and develop new treatments to fight them.

    My colleagues have heard me talk before about diseases like spinal muscular atrophy just referenced by our committee chair. This does not just affect a sick child, but it also fundamentally changes the daily lives of their [[Page H324]] family, their school, their community. The low prevalence of such diseases makes them particularly hard to research. But for those affected, a new cure or treatment could mean a world of difference.

    The National Pediatric Research Network Act will be an important step forward to helping these families and those who may develop these diseases long into the future.

    {time} 1730 I am a nurse, a mother, and a grandmother as well, and I am very pleased to have authored this bill that will help bring more treatments and cures to many children.

    Children have unique health care experiences, treatment needs, research challenges; and while public and private research has come a very long way on pediatric diseases over the years, we know that we are still far behind on important diagnostics, cures, and treatments for far too many of our ailing children, which is why this bill is so important.

    I especially thank Representative Cathy McMorris Rodgers for co- leading this bill through two Congresses with me and for all her hard work on children's health issues. I want to thank the leadership of the Energy and Commerce Committee. Chairman Upton I have referenced, but I also thank Ranking Member Waxman, Chairman Pitts, Ranking Member Pallone, and their staffs for their dedication to this bill. I especially thank Ruth Katz for helping us move this bill through the committee quickly. I thank my colleague Congresswoman DeGette, who has worked on this bill with me for many years.

    Finally, I would like to thank my constituents Bill and Victoria Strong for their tireless work on behalf of their daughter, Gwendolyn, and all the children with spinal muscular atrophy and other rare diseases. For them, I wear a particular bracelet, which reads: ``Never give up.'' Gwendolyn, who it was once thought would never live past age 2, is now in kindergarten. The work her parents, Bill and Victoria, do day in and day out to make their daughter's world a little better is so inspiring. The dedication of her parents and their medical team truly allows Gwendolyn to live life to the fullest. They have shown how entire communities can come together and fight diseases like SMA.

    I urge my colleagues to follow their example. Come together, and support this bill today so we can do all we can to make it law.

    Mr. Speaker, the National Pediatric Research Network Act is an important bill, not just for current and future researchers, but for sick children and for their families. It is a bipartisan measure that received overwhelming support in the 112th Congress, and it's the right thing to do, so I urge its full support.

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