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The Gabriella Miller Kids First Research Act, first signed into law in 2014, is perhaps one of the most important pieces of legislation and resulting research and data-resource programs for pediatric disease, to date. It begins to fill the void left by the industry of medical research and its biggest players: pharmaceutical companies, the larger cancer charities and research investors, and the NIH, when it comes to pediatric disease.
All childhood cancers are considered rare with that label are immediately placed on a sort of indefinite hold of irrelevance. This new pediatric research and data-resource program at the NIH is the game changer for children who face deadly disease and an uncertain future.
Ellyn Miller, mother of Gabriella who was diagnosed with DIPG–diffuse intrinsic pontine glioma–at the tender age of 9 and who died almost a year later in 2013, joins us to discuss developments in this program, it’s Kids First 2.0 continuation, and Gabriella’s legacy of strong advocacy for children with cancer and for the most relevant and transformative scientific research.
