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…
