A Closer Look with Ellyn Miller

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.



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About Janet

Blessed with varied interests and an artistic and musical upbringing, Janet had health challenges throughout her young adult life. Despite these she graduated Cum Laude from Wellesley College with an award of distinction for acting, and had also been a champion equestrian. She began a family with her husband Barry later in life, and had finally found happiness with daughter Sophie-Marie (3/12/06) and then baby (Jack 8/30/08). Five weeks after his birth, the family escaped a wildfire in which all worldly possessions were lost. The family relocated in December of 2008 to Agua Dulce CA where they currently reside.

Jack began to have unsettling symptoms at the age of 3; he was taken to Children's Hospital Los Angeles and was diagnosed with DIPG, or diffuse intrinsic pontine glioma, on Friday Oct. 28, 2011, indisputably the darkest experience of Janet's life. The outrage of it made her determined to find the good in the situation, and she asked God to "Put me to work!" After Jack's death, she remained determined to start working to find solutions to DIPG and incorporated Jack's Angels at the end of 2012; the Foundation began its work in 2013. Despite the fact that DIPG is responsible for the majority of brain tumor deaths in children, she had been told there were no solutions for Jack because "the numbers aren't great enough for investors." This remains the primary motivation in her advocacy work, to prioritize children's lives in our medical system in the United States.