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…
re: H. Res. 69 House Vote before the end of Session II, 115th Congress November 28, 2018 To: The Honorable Speaker of the House of Representatives Paul Ryan (WI-1), The Honorable Majority Leader Kevin McCarthy, Minority Leader Nancy Pelosi (CA-12); The Honorable Chairman of the Energy…
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…
The Gabriella Miller Kids First Research Act, first signed into law in 2014, is perhaps one of the most important pieces of legislation and resulting research and data-resource programs for pediatric disease, to date. It begins to fill the void left by the industry of medical research and its biggest…
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…
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…
We get a first-hand look inside the controversial treatment program in Monterrey, Mexico, to which many DIPG families flock with the kind of determination that only an utter lack of solutions and hope can inspire. Kimberly Beauchamp, through an introduction close to the heart with her niece Kiera, discovered this…
What is it like when there is literally nothing they can do, when your child is ok one day, but after the next might never walk again? Jodi Jacobs tells it like it is for DIPG families, discussing what happened to her 7 year old daughter, Cheyanne. DIPG, often labeled…
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…
News From Congressman Michael McCaul, Co-Chairman and Founder of the Congressional Caucus for Childhood Cancer: Dear Friends, Last week, I hosted the 9th Annual Childhood Cancer Summit at the U.S. Capitol Visitors Center. At the summit, we celebrate our accomplishments while reinvigorating our drive to eradicate the number one killer…
