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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Steven and Angie Giallourakis and the Steven G. AYA Cancer Research Fund

Two-time cancer survivor Steven Giallourakis joins us with his mother Angie to share their experience which inspired the Steven G. AYA Cancer Research Fund in Avon Lake, Ohio. Angie Giallourakis is President of the organization which has programs in wellness, education, research and advocacy for young people with cancer. “AYA” …

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Real Solutions for Research Funding: NC3 Leads in Pennsylvania

Christopher Winters, President of NC3, the National Childhood Cancer Coalition, shares with us his work at the state level culminating 10/25 in the passage of HB46 in the Pennsylvania Legislature.  The bill creates the option for individuals to donate from their state income tax refund to pediatric cancer research.  In a …

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American Childhood Cancer Organization, CEO Ruth Hoffman

The gold ribbon and the childhood cancer awareness movement started with a few good moms (and dads) in the 1970s…  Ruth Hoffman, CEO of the American Childhood Cancer Organization, walks us through the journey to today and Amazon’s million gold ribbon boxes!  “Still, there’s a long way to go…” says …

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Annette and the Carson Leslie Foundation Host the Golden Toast

Annette Leslie is a mom who has been through the harrowing experience of losing her son to medulloblastoma in 2010. His extraordinary life and character inspired the Carson Leslie Foundation’s inception that same year, in Dallas Texas, and launched her into a world of advocacy for children with cancer, pediatric …

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NCI-COG Pediatric MATCH trial to test targeted drugs in childhood cancers

NCI article July 24, 2017 Shared by Jack’s Angels Foundation Today investigators at the National Cancer Institute (NCI) and the Children’s Oncology Group (COG) announced the opening of enrollment for a unique precision medicine clinical trial. NCI-COG Pediatric Molecular Analysis for Therapy Choice (Pediatric MATCH) is a nationwide trial to explore …

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Mom in the Midst

A warning to listeners:  this contains emotionally sensitive material.  CCTR interviews Judith Jaimes Contreras, mom to Ruben who is suffering through the progression of DIPG, a deadly pediatric brain tumor. She candidly shares the reality that hundreds of other families in the US are facing right now: the challenge of …

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