Every Voice Matters: The Power of Initiative in Advocacy

Wendy and Dean Fachon of Rhode Island join us to talk about state legislation, national resolutions and the legacy of their son Neil, making a strong case for “Right to Try.” Paul Miller from Colorado shares about the power of social media and the magic of belief, with 2 successful…

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Thank you R-cosponsors; last chance for H. Res. 69, meeting request DIPG Advocacy Group, Dec. 3-5

(Letter was sent to:  Barbara Comstock (VA-10), William Hurd (TX-23), Lamar Smith(TX-21), John Duncan (TN-2), Ryan Costello(PA-6), Scott Perry (PA-4), Duncan Hunter (CA-50), Andy Barr (KY-6), Daniel Donovan (NY-11), Brian Fitzpatrick (PA-8), Chris Collins (NY-27), Evan Jenkins (WV-3), Lou Barletta (PA-11), Steve Stivers, (OH-15), David Joyce (OH-14), and cc’d to…

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#PeytonManningMeetJackson!

Jackson is a boy from Colorado fighting a devastating foe: DSRCT. Desmoplastic Small Round Cell Tumor (sarcoma) is a frequently misdiagnosed, rare pediatric cancer with only 200 known cases in the United States, and a poor prognosis. His father, Jason Frank, candidly discusses the monumental challenges confronting his family, and…

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“The Promise”, with Donna Speckhard

Donna Speckhard brings us a sneak-peek of the upcoming docuseries “The Promise” chronicling the experiences of children with cancer and their families and shedding light on important issues that affect us all in the childhood cancer community. The lack of viable solutions for them poses the question, why it is…

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Why DIPG? The One to Beat from Awareness to Research

DIPG is front and center with researchers, devastated by the picture painted by the statistics of this killer of very young children, and with advocates who have been working for years to get a greater national conversation about the chronic lack of research funding for the deadliest pediatric cancers. DIPG…

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What If Your Child Lives When Expected to Die?

No matter how much time one may have with a child diagnosed with terminal cancer, the stresses of life can be extreme. Natalie Avila was diagnosed with DIPG, a common yet deadly pediatric brain cancer just before her third birthday. She was given 3-6 months to live, yet she is…

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Project Haystack Part II

Molly Lindquist, CEO of Children’s Cancer Therapy Development Institute in Beaverton OR, joins us to share her personal story of cancer survival and the importance of the parent-funded research at cc-TDI. We continue exploring the research Project Haystack for rhabdomyosarcoma, and hear from two more foundations helping to fund this…

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Part I: “Project Haystack” at Children’s Cancer Therapy Development Institute

Dr. Charles Keller, Scientific Director of the Children’s Cancer Therapy Development Institute, describes for us in opening the show, the ongoing work at the Institute funded by parent-led foundations in its quest to make all forms of childhood cancer survivable, specifically Project Haystack, an international collaboration in rhabdomyosarcoma research. In…

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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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Chase Jones and the Biden Cancer Initiative

Chase Jones is a survivor of childhood brain cancer, founder of Vs. Cancer Foundation, and is organizing community leadership around the country for the September 21 Biden Cancer Summit. He discusses his own experience with brain cancer at 18 and its personal ramifications, including survivor guilt and how he overcame…

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