Fly like a Superhero with Smile High Club

Jim Churchman joins us to share the story of the Smile High Club, a non-profit organization dedicated to putting smiles on faces and hope in the hearts of children facing illness or any physical challenge. A stuntman for many years, Jim Churchman is a 2nd Unit Director and Stunt Coordinator …

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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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Theodore Lives with Juvenile Batten CNL3 Disease

Nurse and family confidante Nick Maroulis, and brother of Theodore Vasilis Ntoumas join us to discuss Batten disease and the effects of fatal, rare, pediatric disease on the family and in a country where support is so difficult to instate. Nick comes to us from Greece, while we speak with …

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NORD Advocates for Rare Diseases

Paul Melmeyer, Director of Federal Policy for NORD, the National Organization for Rare Disorders,joins us to discuss NORD’s advocacy activities at the local, State, and federal level. The pioneering organization in support of all patients with rare diseases first introduced the Orphan Disease Act in 1983, the year of its …

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Global Childhood Cancer Advocate Gerry Tye in Sydney, Australia

Gerry Tye joins us from Sydney Australia to discuss the changes in the childhood cancer community over the past six years. A father of three boys, Gerry’s middle child Talin (age 5) was diagnosed with brain cancer in 2012, passing away shortly thereafter. Beginning in relative obscurity, Gerry’s advocacy for …

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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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