Your support is needed to continue building upon established, proven methods of research, SHARED data collection and SHARED data sharing that will lead to more refined diagnostic capabilities and ultimately more targeted therapies. The original Gabriella Miller Kids First Pediatric Research Act was passed by Congress in 2014 and President Obama signed it into law the very same year. With the $126 million in funding provided in the original 10 year Act, the National Institutes of Health (NIH) Common Fund established the very successful Gabriella Miller Kids First Pediatric Research Program (Kids First).
While hosting a roundtable where doctors, public health officials, and advocates, including Virginia-10 constituents shared their own experiences of the importance and impact of the original Gabriella Miller Kids First Research Act, as well as the need to continue funding beyound 2024 when the Act sunsets. On January 28, 2021, Congresswoman Jennifer Wexton, VA-10, introduced the bipartisan Gabriella Miller Kids First Research Act 2.0 (H.R. 623). You can watch the full roundtable here.
Congresswoman Wexton worked closely with Ellyn Miller, a Virginia-10 constituent and Gabriella’s mother, to introduce the Gabriella Miller Kids First Research Act 2.0. Ellyn and her husband, Mark, founded Smashing Walnuts in 2013 to advocate and raise awareness about childhood cancer. On January 28, 2021, Congresswoman Wexton (D-VA-10) introduced the bipartisan Gabriella Miller Kids First Research Act 2.0 (HR 623). Representatives Tom Cole (R-OK-04), Peter Welch (D-VT-At Large), and Gus Bilirakis (R-FL-12) joined Jennifer Wexton who introduced this legislation. In addition, since then 92 more Representatives (see below) cosponsored. As of this writing, we already have over 300 foundations and organizations including the Alliance for Childhood Cancer and more than 1,600 advocates covering all 50 states, who have signed a letter of support for this new bill. Please consider signing to show your support.
With funding provided by the act over the past eight years, the National Institutes of Health (NIH) Common Fund established the very successful Gabriella Miller Kids First Pediatric Research Program (KidsFirst). The Kids First Program fosters collaborative research to uncover the genetic etiology of childhood cancer and structural birth defects. In pursuit of this goal, NIH developed the Gabriella Miller Kids First Pediatric Data Resource Center (Kids First Data Resource Center), and features a public-facing, web-based portal which allows researchers to search, access, aggregate, analyze, and share annotated genomic sequence, variant, and phenotypic datasets. At present there are over 50,000 data sets available to researchers. This resource is of high value for the pediatric research community and will facilitate analyses across diverse conditions to uncover shared developmental pathways. Under this program, more than two-dozen pediatric research focused laboratories have generated vital genomic data that will be shared with the entire research community. The overall goal is to help researchers understand the underlying mechanisms of these conditions leading to more refined diagnostic capabilities and ultimately more targeted therapies or interventions. This First Act is just the beginning, we must continue and enhance this vital work, because while cancer is the single leading cause of death by disease among American children, currently only 4% of the National Cancer Institute’s $4.9 billion budget goes towards development of cures and treatments for childhood cancer. Because of limited research in the past 30 years, only 6 drugs have been developed exclusiverly to treat childhood cancer.
Because of the successes of Kids First Program and Data Resource Center, Representative Jennifer Wexton (D-VA10), along with 17 other bipartisan cosponsors, introduced the Gabriella Miller Kids First Research Act 2.0 (HR 623) which will reauthorize Kids First and will, over the next five year period, be able to expand a truly comprehensive SHARED-DATA resource for scientists researching the majority of pediatric cancers and rare disease, and will continue to support development of computational tools to analyze very large, complex genomic, and clinical data sets.
Cosponsors include more than 100 Representatives and 7 Senators. On May 18, 2022, Kids First 2.0 was overwhelming passed (53 to 0) by the full House Energy and Commerce Committee and amended to $125 million over five-year as a Kids First reauthorization of $25 million per year. As of this writing, there are over 300 foundations and organizations including the Alliance for Childhood Cancer and more than 1,600 advocates covering all 50 states, who have signed a letter of support to the House and Senate for this new bill.
Lend Your Support Now!
Your support is essential now to build upon the successful work that has already been done and to expand and enhance our research and data collection capabilities in the future. Please read the Letter of Support for The Gabriella Miller Kids First Research Act 2.0 and help show our legislators the importance of this funding source by signing up here.
Ellyn Miller, always Gabriella’s mom