Last year in the 117th Congress, you cosponsored a 5 year extention of the Gabriella Milller Kids First Research Act HR 623. You will recall that the original act was intended to be a 10-year program. With $113 million funding provided by the act over the past nine years, the National Institutes of Health (NIH) Common Fund established the highly successful Gabriella Miller Kids First Pediatric Research Program (Kids First). Another $13 million has been appropriated over the remaining year of the original Act.
With your support with the support of others in the House, HR 623 passed on July 27, 2022, but unfortunately the Senate version failed by a single vote at year end. Because of the successes of the Kids First Program and Data Resource Center have had over the past nine years, Representatives Jennifer Wexton (D-VA10), along with Tom Cole, R-OK, Gus Bilirakis, R-FL, and Debbie Dingell, D-MI, and 33 other bipartisan cosponsors re-introduced the Gabriella Miller Kids First Research Act 2.0. As with the original bill, HR 3391 will also provide Kids First with a five year reauthorization of $12.6 million per year. Over the next five year period, Kids First will 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. In shared support of the Kids First program, Senators Tim Kaine, D-VA, and Jerry Moran, R-KS, with 12 other bipartisan Senators recently re-introduced the Gabriella Miller Kids First Research Act 2.0 as S.1624.
As a reminder, The Kids First Program established with the 2014 bill 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 is in 
the process of expanding a public-facing, web-based portal that allows researchers to search, access, aggregate, analyze, and share annotated genomic sequence, variant, and phenotypic datasets. 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 8% 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.
With The Gabriella Kids First Research Act 2.0, HR. 3391 we will be able to continue to develop a truly comprehensive shared-data resource for scientists researching the majority of pediatric cancers and structural birth defects, and support development of computational tools to analyze these very large, complex genomic, and clinical data sets.
As of this writing, there are over 300 foundations and organizations including the Alliance for Childhood Cancer, the Coalition Against Childhood Cancer and more than 2.000 advocates covering all 50 states, who have signed a letter of support to the House and Senate for this new bill.
Again this year, your support is essential to continue to build upon the successful work that has already been done and to expand and enhance our capabilities in the future. Please consider cosponsoring H.R. 3391 – Gabriella Miller Kids First Research Act 2.0 as you did last year’s legislation.
Ellyn Miller, always Gabriella’s mom
Four-Square Clobbers Cancer 