The First Ladies of Data

with Ellyn Miller and Amanda Haddock Today’s show features groundbreaking innovation for our medical research system to better accommodate the research needs for childhood cancer, inspired from the experiences of both of our guests who witnessed the urgent, unmet needs of children with brain cancer, the leading cause of cancer-related…

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DIPG as Ambassador to Congress and the Public for Childhood Cancer

The Public needs powerful examples attain sufficient awareness to ensure accountability from Congress. If we want childhood cancer legislation like STAR and RACE to truly be supported, to have their respective allocations approved, to build upon and allow greater development and support for pediatric research, the Public must be aware–this…

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Celebrating a Win for Childhood Cancer Advocacy!

St. Baldrick’s Foundation, perhaps our greatest leader in advocacy today, brings us this amazing news about the STAR Act.  Because of the support of so many individual advocates across the country, and so many supporting organizations for pediatric cancer, STAR is “getting the money” from the Senate Appropriations Committee!  This…

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Working Toward Greater Precision in Childhood Cancers

Working Toward Greater Precision in Childhood Cancers Francis Collins, March 6, 2018 posted on NIH website, direct link above Each year, more than 15,000 American children and teenagers will be diagnosed with cancer. While great progress has been made in treating many types of childhood cancer, it remains the leading cause…

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NEW Information Regarding the Funding Opportunity Announcement (FOA) PAR-16-348

February 1, 2018,  The NIH Gabriella Miller Kids First Pediatric Research Program Team Dear Colleagues- The Kids First Program would like to inform you that the Funding Opportunity Announcement (FOA) PAR-16-348, “Small Research Grants for Analyses of Data for the Gabriella Miller Kids First Data Resource (R03)” recently expired, and the…

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Letter from Gabriella Miller Kids First Program

Dear friends and followers, We would like to share information with you from the Gabriella Miller “Kids First” Pediatric Research Program, inspired of course by the late great, very young yet highly mighty Gabriella Miller, DIPG warrior, and childhood cancer activist.  There is also the opportunity here to subscribe to…

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New Funding Opportunity in the Kids First Program

Message from NIH to subscriber transmitted by Janet Demeter (JAF) 3-28-2016 Dear Colleague, The Common Fund’s Gabriella Miller Kids First Pediatric Research (https://commonfund.nih.gov/KidsFirst) program (Kids First) is developing a data resource for the pediatric research community of well-curated clinical and genetic sequence data that will allow scientists to identify genetic…

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2015 Advocacy Report

For partnering organizations, groups, individuals. Jack’s Angels Foundation:  Advocacy Report and General Update for Collaborative Individuals, Groups, and Organizations “What your money’s been doing.”   General Description:  This follows a journey in advocacy for children and their families with DIPG, that more can be done for them in the future, and…

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Letter to the President

pdf version   letter sent to Congressional leaders President Barack Obama The White House 1600 Pennsylvania Avenue NW Washington DC, 20500 Tuesday, September 15, 2015 Dear President Obama, I cannot thank you enough for your kind replies to my previous letters about DIPG children and the desire for more effective action…

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Definition of Terms-a Journey in Awareness

A Journey in Awareness Everything changed after October 28, 2011 when my son Jack was diagnosed with diffuse intrinsic pontine glioma, or “DIPG”, a pediatric brainstem tumor with no survivors.  Though I lost my precious 3 year old boy to this practically unknown monster, I knew at the time that…

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