Jaime King, mother to Katie(7), aka Katherine the Brave, and Mark Landis, father to Parker (5), describe the realities faced by parents of DIPG-diagnosed children today. DIPG, diffuse intrinsic pontine glioma, is an invariably terminal pediatric brain tumor with no change in treatment protocol for over 40 years. Parents discover…
CCTR presents Dr. Kathy Warren, top researcher in pediatric neuro-oncology at the Center for Cancer Research at the National Cancer Institute (NCI), who discusses the history of DIPG research and the nature of this strange and misunderstood tumor, challenges to treatment, and hopeful new lines of research for effective therapies…
National Brain Tumor Society CEO Named to Cancer Moonshot Initiative’s Blue Ribbon Panel of Experts 2016-04-04 David F. Arons to represent patient advocates on the panel, which will help inform scientific direction for Vice President Biden’s National Cancer Moonshot Initiative National Brain Tumor Society (NBTS), the largest nonprofit organization in…
After Jack died I learned that DIPG is responsible for most of the brain tumor deaths in children, so, how many have to die until their lives are worth saving? April 2, 2016 Santa Clarita, CA—The significant rise in awareness for the devastating lack of funding for research into causes…
Paul speaks in depth about his commitment to children with cancer, to speak for them and to carry the message that they are being systematically ignored by our medical research system. Paul volunteers for St. Baldrick’s Foundation, which gives most of it’s income to research and is the largest contributor…
Message from NIH to subscriber transmitted by Janet Demeter (JAF) 3-28-2016 Dear Colleague, The Common Fund’s Gabriella Miller Kids First Pediatric Research (https://commonfund.nih.gov/KidsFirst) program (Kids First) is developing a data resource for the pediatric research community of well-curated clinical and genetic sequence data that will allow scientists to identify genetic…
Part I: Advocate for children with cancer Gerry Tye shares his experience with his son Talin, diagnosed with DIPG in 2012, and for parents the importance of trusting one’s instincts regarding one’s own child when confronted with medical protocol for terminal illness. Gerry supports children diagnosed with cancer and their…
George Dahlman, CEO of the Children’s Cause for Cancer Advocacy, talks about the importance of advocacy in affecting change in legislation and the way our Administration, Congress, and Government Agencies communicate to better accommodate the needs of our children with cancer. Host Janet Demeter enjoys a rant about the “Great…
Jack’s Angels Foundation announces its 1st Annual “Relay for Jack!” Saturday, May 28 at Vasquez Rocks County Park in Agua Dulce, raising awareness to DIPG—cancer’s death-row for kids; the 2nd most-common pediatric brain tumor is responsible for roughly 80% of brain cancer deaths in children annually. Event proceeds support “Jack’s…
Peter Brown and Victoria Sardi-Brown tell the story of how their foundation began in 2009 after the death of their precious boy Mattie, 7, who had been diagnosed with osteosarcoma. Mattie Miracle Foundation has a powerful advocacy mission emphasizing the need for psychosocial standards of care for children with cancer…
