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  • Gabriella Miller Kids First Research Act

    by Representative Gregg Harper

    Posted on 2013-12-11

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    HARPER. First of all, I want to thank Congressman Peter Welch for his hard work on this bill, and I certainly thank Leader Eric Cantor and Congressman Tom Cole.



    Mr. Speaker, creating a lifetime of hope and opportunity for our most vulnerable kids is more important than subsidizing weeklong political pep rallies for the Democratic and Republican parties. This is why the House must advance H.R. 2019, the Gabriella Miller Kids First Research Act, a bill that pays for children's medical research with the $126 million that the Federal Government currently sets aside for political conventions.

    On November 14, 2013, I had the privilege to meet in Leader Cantor's office with Ellyn and Mark Miller. I watched them struggle to come up with the words to express their grief, which I saw become steadfast determination to do something special for Gabriella by allowing this bill to be named after their precious daughter. I am wearing the yellow ``Smashing Walnuts'' bracelet that they gave me that day. I have watched numerous videos of Gabriella in which she has made moving and profound statements, such as, ``Once you get cancer, you kinda gotta be all grown up,'' and ``Sometimes you have to stop talking and start doing.'' As the father of a 24-year-old son who is living with Fragile X syndrome, I understand the challenges families face in raising children with special needs, but I also recognize the value of expanded and improved medical research. While raising a child with a genetic disorder can be very difficult, for my family, it has been a blessing, especially knowing that my son, Livingston, is here today.

    Mr. Speaker, Evie Horton and her cousin, Reese McDonald, who are kids from Mississippi who fight with all of their strength to overcome the struggles of spinal muscular atrophy, are two more reasons that I introduced this bill. Recent scientific research breakthroughs have also given hope to so many families, but in order for clinical trials and other advancements to meet their full potential, additional Federal research must be directed to pediatric research.

    Mr. Speaker, Members of both parties have an opportunity to demonstrate the priorities of this body. Will it be research for our most vulnerable kids or will lawmakers vote to continue funding political party conventions at the taxpayers' expense? I have listened to how this has been described by the other side. It has been called a joke, a ruse, a fraud, not credible, window dressing, smoke and mirrors, and their referring to Republicans supporting sequestration, I guess, means that it has been forgotten by our friends on the other side of the aisle that 95 Members of the Democratic Party voted in favor of sequestration.

    Mr. Speaker, let's get our priorities straight. Let's vote ``yes'' on the Gabriella Miller Kids First Research Act.

    National Fragile X Foundation, Walnut Creek, CA, June 12, 2013 ATTN: Scot Malvaney, Policy Director.

    Representative Gregg Harper, Cannon Building, Washington, DC.

    Dear Representative Harper: Confirming our earlier conversations with your office, the National Fragile X Foundation indeed agrees that additional research is needed to find the cures for fragile x syndrome, autism spectrum disorder, childhood cancer, and many other diseases impacting children.

    We are therefore pleased to add our support to The Kids First Research Act (H.R. 2019) that you recently introduced with Representative Tom Cole.

    As you well know, Fragile x syndrome is one of the conditions for which a cure (or targeted treatments) exist right around the corner.

    We wholeheartedly support this critical research initiative which seeks both to identify much needed additional funding for the NIH and to promote collaborations and collaborative spending across related conditions like fragile x syndrome and autism.

    Thank you for your leadership on this important issue.

    Jeffrey Cohen, JD, Director, Government Affairs.

    ____ Global Genes, Rare Project, Aliso Viejo, CA.

    Hon. Gregg Harper, House of Representatives, Cannon House Office Building, Washington, DC.

    Dear Congressman Harper, Global Genes/RARE Project is one of the leading rare and genetic disease patient advocacy organizations in the world. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 800 global organizations. Our mission is centered on increasing rare disease awareness, public and physician education, building community through social media and supporting research initiatives to find treatments and cures for rare and genetic diseases.

    We, along with the organizations listed below, are writing to support The Kids First Research Act of 2013 (H.R. 2019). This bipartisan bill would eliminate taxpayer financing of presidential campaigns and party conventions and reprogram those savings to provide for a 10-year pediatric research initiative through the Common Fund administered by the National Institutes of Health.

    During these trying fiscal times, we are pleased to see efforts that would increase funds for pediatric research.

    Unfortunately, pediatric research is terribly underfunded and largely overlooked, as medicines and devices are often untested in children. Children are usually prescribed medications that have only been tested in adults, which is unacceptable. Children are not adults. More efforts must be made to properly research drugs and devices in the pediatric population, and this is an important step in that process.

    We are pleased to express our strong support for H.R. 2019, and believe this legislation will help to bring increased funding and awareness to pediatric medical research. We look forward to working with you and your staff to ensure this bill is enacted into law.

    Sincerely, Global Genes/RARE Project, Alstrom Angels, Cure AHC, Dravet Syndrome Foundation, FMDSA, Gavin R Stevens Foundation, GT23 Foundation, Gwendolyn Strong Foundation, Hannah's Hope Fund for GAN, Hereditary Disease Circle, I Have IIH Foundation, In Need of a Diagnosis, INOD, Jonah's Just Begun, Joshua Hellmann Foundation for Orphan Disease Klippel-Feil Syndrome Alliance.

    Little Miss Hannah Foundation, MPS Society, National Gaucher Foundation, Inc., National Tay-Sachs & Allied Diseases Association, Inc., Noah's Hope, Noonan Syndrome Foundation, Peace, Love, and Trevor Foundation, Rasopathies Foundation, Sanfilippo Foundation for Children, Sarcoma Foundation of America, Stop ALD Foundation, Team Sanfilippo, United Leukodystrophy Foundation, U.R. Our Hope.

    ____ National Down Syndrome Society, New York, NY, May 9, 2013.

    Hon. Gregg Harper, House of Representatives, Cannon HOB, Washington, DC.

    Dear Congressmen Gregg Harper: On behalf of the National Down Syndrome Society (NDSS), I am pleased to offer this letter of support for your legislation H.R. 1724, the Kids First Research Act. This legislation will expand pediatric research at the National Institutes of Health by prioritizing resources for research for children with Down syndrome which are currently underrepresented in the NIH budget process.

    NDSS supports over 400,000 Americans with Down syndrome along with their families, friends, teachers, coworkers and others who make people with Down syndrome a priority. Our mission is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

    The re-directing of federal dollars that are currently spent on presidential campaigns and party conventions will expand pediatric research at NIH through the NIH Common Fund. This funding will be used for research that is critical to improve the quality of life for individuals with Down syndrome other pediatric conditions.

    NDSS is the largest nonprofit dedicated to advocating for people with Down syndrome [[Page H7660]] and their families at the federal, state and local levels of government. At NDSS, we envision a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities. Your legislation aligns directly with our mission, and we are proud to support your efforts.

    Our organization applauds your work on behalf of people with Down syndrome and other pediatric conditions, and looks forward to working with you. On behalf of all individuals and families from the Down syndrome community, I thank you for your leadership on this legislation and offer our enthusiastic endorsement.

    Sincerely, Sara Hart Weir, Vice President, Advocacy & Affiliate Relations.

    ____ JDRF, New York, NY, May 10, 2013.

    Hon. Gregg Harper, House of Representatives, Cannon House Office Building, Washington, DC.

    Dear Representative Harper: On behalf of JDRF and its volunteers, I write to share JDRF's support for your legislation, the Kids First Research Act of 2013, which would provide additional funds to the National Institutes of Health (NIH) for research on pediatric diseases and disorders.

    Type 1 diabetes (T1D) is a costly and burdensome autoimmune disease for which there is no cure. The disease usually strikes in childhood, adolescence, or young adulthood, and lasts a lifetime. People with T1D must closely monitor their blood sugar levels and inject or infuse insulin in order to live. Even with the best of efforts and latest technology, blood sugar levels in patients still fluctuate widely and over the long-term can result in devastating complications, such as kidney disease.

    Unfortunately, the incidence of type 1 diabetes (T1D) is rising at an alarming rate. From 2001 to 2009, T1D among youth increased 23 percent. If unabated, the prevalence of T1D in youth would double every generation.

    JDRF is doing its part to advance research to better treat, prevent and ultimately cure T1D. Last year, JDRF spent $110 million on T1D research. Our work complements the research being done at NIH. The additional funding provided to NIH by the Kids First Research Act of 2013 could help us realize new therapies and research breakthroughs, that could improve the quality of life for people with T1D and help reduce the associated costs of the disease, sooner rather than later.

    Your leadership on this issue and strong support of other issues that affect the T1D community are greatly appreciated.

    Sincerely, Jeffrey Brewer, President & Chief Executive Officer.

    ____ Autism Speaks, New York, NY, May 14, 2013.

    Hon. Greg Harper, House of Representatives, Cannon House Office Building, Washington, DC.

    Dear Congressman Harper: I am writing to thank you for your leadership on behalf of America's autism community, as demonstrated by your commitment to prioritize autism and pediatric research through the Kids First Research Act. As you know, recent CDC data suggests the prevalence of autism is closer to 1 in 50 children. As you also know, many of these individuals also have Fragile X Syndrome and your commitment to this community has made a real difference during your time in Washington, DC. It is critical to the autism community that we have national leadership to address the epidemic growth of this disorder.

    I am grateful that you and your colleagues recognize this crisis and are striving to address it in several policy areas, including research, disability savings accounts and improved services for our military families affected by autism. I am particularly encouraged by your desire to see autism and pediatric research elevated as a priority at the National Institutes of Health through the Kids First Research Act.

    I look forward to working with you in the days and weeks ahead in addressing America's autism crisis.

    Sincerely, Liz Feld, President.

    ____ The Coalition for Pediatric Medical Research, June 6, 2013.

    Hon. Fred Upton, Chairman Committee on Energy & Commerce, U.S. Congress, Rayburn House Office Building, Washington, DC.

    Hon. Joe Pitts, Chairman, Committee on Energy & Commerce, Subcommittee on Health, Rayburn House Office Building, Washington, DC.

    Hon. Henry Waxman, Ranking Member, Committee on Energy & Commerce, U.S. Congress, Rayburn House Office Building, Washington, DC.

    Hon. Frank Pallone, Ranking Member, Committee on Energy & Commerce, Subcommittee on Health, Rayburn House Office Building, Washington, DC.

    Dear Chairmen Upton and Pitts & Ranking Members Waxman and Pallone: On behalf of the Coalition for Pediatric Medical Research (CPMR), a group of more than 20 of our nation's leading children's research hospitals, I am writing to offer our support for H.R. 2019, the Kids First Research Act of 2013.

    For too long, our nation has underinvested in pediatric research as a proportion of the overall population. Healthy living begins with a healthy infancy and childhood, and inadequate support for pediatric research negatively affects our nation's children, particularly those suffering from devastating diseases and disorders. It also hinders our ability to prevent and/or treat adult-onset disorders, such as diabetes and heart disease, whose causes are rooted in the childhood years.

    H.R. 2019 is a much-needed step forward to address this imbalance. This legislation will help make clear that the health and well-being of our children is a national priority by reallocating scarce public resources to support pediatric research sponsored by the National Institutes of Health (NIH). This infusion of funds would provide a much-needed boost to our pediatric research community, enabling it to expand research efforts to identify causes of and treatments for many of the most devastating diseases and disorders that affect children. The Coalition is particularly pleased that the legislation would fund multi-institute research activities under the Common Fund, helping drive coordination and collaboration.

    The Coalition strongly believes that if enacted into law, a portion of this funding should be used to provide competitive awards to support the research infrastructure and resources necessary to conduct a comprehensive 21st Century pediatric research agenda. Such support should focus on shared and core resources such as biobanks, data warehouses, bioinformatics infrastructure, and the advanced computing technologies needed to process increasingly large data sets. It should also help expedite clinical trials in patients with rare diseases, helping link sites and enabling researchers to recruit a critical mass of kids with any one condition. In addition to the Kids First Research Act, the Coalition continues to strongly support H.R. 225 and S. 424, the National Pediatric Research Network Act, which would authorize NIH to establish a National Pediatric Research Network. We see these two proposals as highly synergistic and complementary and applaud your committees and the full house for quickly passing this bill--for the fourth time--earlier this year.

    On behalf of the Coalition, I thank you for your attention to this. If you have any questions, please feel free to contact me at 202.312.7499 or via nicholas.manetto@ faegrebd.com.

    Sincerely, Nick Manetto, Coalition Advisor.

    ____ Leukemia & Lymphoma Society, Washington, DC, June 6, 2013.

    Hon. Gregg Harper, House of Representatives, Cannon HOB, Washington, DC.

    Hon. Peter Welch, House of Representatives, Rayburn HOB, Washington, DC.

    Hon. Tom Cole, House of Representatives, Rayburn HOB, Washington, DC.

    Dear Representatives Harper, Cole and Welch: The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary health agency dedicated to blood cancer. Each year, over 140,000 Americans are newly diagnosed with blood cancers, accounting for nearly 10 percent of all newly diagnosed cancers in the United States. LLS funds lifesaving blood cancer research around the world and provides free information and support services. The mission of LLS is to cure leukemia, lymphoma, Hodgkin's disease and myeloma and provide our patients with affordable, sustainable access to quality healthcare.

    LLS is writing to support H.R. 2019, the Kids First Research Act, which will increase funding for pediatric medical research activities administered through the Common Fund at National Institutes of Health (NIH). H.R. 2019 provides much needed funding for crucial research projects, at a critical time in our nation's progress in medical research. In cancer research in particular, we are yielding unprecedented examples of precision based medicine that are fundamentally altering the way in which we will categorize and treat cancers going forward. These funds will help advance the important projects funded by the NIH in areas of high unmet medical need.

    LLS understands and appreciates the tremendous challenges and fiscal constraints Congress currently faces and the need to identify a balanced approach to funding necessary national priorities. We appreciate the bi-partisan support that this legislation has received, and look forward to serving as a resource for your offices.

    Best, Emily Shetty, Senior Director, Federal Legislative Affairs.

    [[Page H7661]] ____ Children's Hospital Association, Alexandria, VA, Overland Park, KS, June 8, 2013.

    Hon. Fred Upton, Chairman, Committee on Energy & Commerce, Rayburn House Office Building, Washington, DC.

    Hon. Henry Waxman, Ranking Member, Committee on Energy & Commerce, Rayburn House Office Building, Washington, DC.

    Dear Chairman Upton and Ranking Member Waxman, On behalf of over 220 of the nation's children's hospitals, I am writing in support of H.R. 2019, the Kids First Research Act of 2013.

    As you know, children are not just ``small adults.'' Children require highly-specialized care and equally specialized research. Despite children accounting for nearly 20 percent of our nation's population, the National Institutes of Health (NIH) has historically invested a far smaller percentage of research dollars--between five and 10 percent--in pediatric biomedical research. Healthy living begins with a healthy infancy and childhood, and inadequate support for pediatric research does a disservice to our nation's children.

    The Kids First Research Act of 2013 would enhance our nation's commitment to pediatric research and help make clear that the health and well-being of our children is a national priority. The legislation would provide a much-needed boost to the pediatric research community, supporting expanded research efforts to identify causes of and treatments for many of the most devastating diseases and disorders that affect children.

    In addition to the Kids First Research Act, the Association continues to strongly support the National Pediatric Research Network Act, H.R. 225, and its companion bill in the Senate, S. 424. This legislation would authorize the NIH to establish a National Pediatric Research Network. The Association views these two proposals as collaborative and applauds the committee and the House for quickly passing H.R. 225 earlier this year.

    IA On behalf of the Children's Hospital Association, thank you for your support on this important issue.

    Sincerely, Jim Kaufman, Vice President, Public Policy.

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