Urgency of Need: Awareness and Research for Pediatric Brain Cancer, with Steven Healey

Steven Healey shares the inspiration behind the foundation, his beautiful, forever-5 year old daughter Brooke who’s life lasted just eight months post diagnosis of DIPG, a deadly pediatric brain cancer. Healey describes the harrowing experience as a parent, but also about a new-found community of families dedicated to funding research…

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Reps Speier, Joyce Introduce Bipartisan Resolution to Fight Deadly Pediatric Cancer

Contact: DC – Tracy Manzer (202) 225-3531 (W) / (202) 538-0641 (C) tracy.manzer@mail.house.gov CA – Katrina Rill (650) 342-0300 (W) / (650) 208-7441 (C) katrina.rill@mail.house.gov Reps Speier, Joyce Introduce Bipartisan Resolution to Fight Deadly Pediatric Cancer Washington, DC –Today, Reps. Jackie Speier (D-San Francisco/San Mateo) and David P. Joyce (R-Cleveland),…

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CC-TDI Research Series I: DIPG Tumor Cell Hotel

Dr. Charles Keller, Scientific Director of the Children’s Cancer Therapy Development Institute, joins us with Dr. Anju Karki, post-doctoral fellow and DIPG Tumor Cell Hotel project leader describe this creative design to affect a real solution for children diagnosed with arguably the deadliest pediatric brain cancer, diffuse intrinsic pontine glioma.…

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Outside the Box Part II, Jessica Doeden DIPG Survivor, Randy Hinton on Causes and Conditions

We follow-up and finish our conversation with Randy Hinton, father to Hayley who was diagnosed with DIPG (brainstem glioma-diffuse intrinsic pontine glioma) and perished to that disease some 13 years ago, regarding causes and conditions that remains the burden of parents to discover in their never-ending hunt for answers. We…

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Outside the Box with No Return: The Extraordinary Story of Hayley Hinton

Randy Hinton joins us from Summerville SC to discuss the circumstances surrounding his daughter Hayley’s diagnosis with brain cancer and the difficulties the family had in procuring effective and consolidated treatment for her. The controversial Burzynski Clinic in Houston TX takes center stage, as does Texas Anderson at Houston and…

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DIPG Advocacy Group Letter to House Leadership

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…

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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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Kimberly Beauchamp: The Hopes and Perils of Making DIPG History

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…

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Jodi Jacobs and the “Support DIPG Awareness” Petition

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…

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