Ana-Mari Carr (Miami, FL) and Bonnie Woodworth (Brandon, FL), an experienced advocate and legislative director of 1 Voice Foundation, join us to discuss their vocational work as advocates for children with cancer–notably DIPG and pediatric brain cancer. The Florida contingency of advocates with DIPG Advocacy Group this year helped to…
The sibling perspective on childhood cancer is often the least recognized; our guest Rachna Prasad is an example of hope, inspiration, and dedication to a greater purpose. Her brother Mithil was afflicted with DIPG, the second most common and the deadliest pediatric brain cancer. As Vice President of the Mithil…
The Gabriella Miller Kids First Research Act 2.0 was introduced in a bipartisan way on April 17, 2020. The original bill signed by President Obama in 2014 established a special fund and database with NIH for childhood genetic diseases and childhood cancers, an area of research which has been historically…
News article from EIN Presswire May 19, 2020, Santa Clarita, CA–This evening, Senator Rubio’s office sent news to Janet Demeter, Organizer for the DIPG Advocacy Group and founder of Jack’s Angels, a childhood brain cancer foundation in Agua Dulce, CA, that a Senate vote had taken place and had unanimously…
Lainey Titus Samant is the Director of Government Relations at the National Brain Tumor Society. Lainey oversees NBTS’s grassroots advocacy program that includes volunteer brain tumor advocates across the country and also works with the rest of the government relations team to monitor and influence legislation and appropriations that affect…
To Chairman Pallone, Ranking Member Walden, Chairwoman Eshoo, and Ranking Member Dr. Burgess: DIPG Advocacy Group and the undersigned are asking for your attention to the leading cause of cancer-related death in children, pediatric brain cancer, and H. Res. 114, the DIPG Awareness Resolution. We are asking for its process…
Grace Wethor is an 18-year-old actress, model, and author based in Los Angeles, CA. After being diagnosed with a brainstem glioma at age 13, and given an 8% chance of survival over 6 months, she moved to LA and started pursuing her dreams. Since then she has spoken about her…
A definite perspective emerges on what has become the Childhood Cancer Awareness Movement from one of its most influential advocates and supporters. Annette Leslie’s son, Carson Leslie, was afflicted with medullobastoma; before perishing to the disease, he wrote a book called “Carry Me” to give the benefit of his experience…
with Ellyn Miller and Amanda Haddock Today’s show features groundbreaking innovation for our medical research system to better accommodate the research needs for childhood cancer, inspired from the experiences of both of our guests who witnessed the urgent, unmet needs of children with brain cancer, the leading cause of cancer-related…
Please submit letters to PNOC/CBTTC by 3-30-2020 Directions What is the novel SPORE Grant? March 15, 2020 To NCI/NIH Leadership: I’m writing in support of the NIH Pediatric Brain Tumor SPORE grant proposal to be submitted by Dr. Resnick and Dr. Prados on behalf of PNOC and CBTTC multi-institutional research…
