Dear Friends, As we write, Alliance advocates around the country are working on the next crucial step to enacting legislation recently signed into law. As many of you may well know. the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, though signed into law, never had it allocations respected,…
Open DIPG (Diffuse Intrinsic Pontine Glioma) Research Project This research project is all about collaboration, and is the first of its kind in many ways. “Open DIPG (diffuse intrinsic pontine glioma)” is the first translational, multi-institutional study that will address an unmet need for treating pediatric Central Nervous System (CNS)…
April 14, 2018 The current medical research system…is non-apologetically and systematically divested of concern. April 12, 2018, Santa Clarita, CA–The DIPG Advocacy Group, organized by childhood cancer advocate Janet Demeter of Agua Dulce, CA is preparing a trip to Washington DC for the week of April 16, 2018 to visit…
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…
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…
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”…
Emmy award-winning journalist Jay Korff of WJLA Washington DC joins us to talk about his new documentary film just released, Endure, featuring “Tattoo Tom” Mitchell and his crew taking on the challenge of the Tahoe 200 ultra-distance trail race in support of childhood cancer awareness. The runners’ odyssey is punctuated…
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…
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…
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…
