Can Newly Approved “Tissue Agnostic” Drugs Benefit Pediatric High-grade Glioma Patients? Recently, the U.S. Food and Drug Administration (FDA) granted accelerated approval* to the drug Rozlytrek (entrectinib, Genentech/Roche**) as a treatment for patients, 12 years or older, whose tumors have a specific genetic defect known as an “NTRK gene fusion.”*** This is now the second drug that the FDA has approved to treat patients with this […] September 16, 2019
Guest Blog: “I would have given anything to trade places with him” On a family vacation in 2011, Mac tried to catch a seagull. Using his boogie board to shield his movements, he inched his way across the sand, closing on his target. With the determination and strong-will that defined him, Mac patiently stalked his target for 20 minutes, taking great care with each step as to […] September 5, 2019
This Is Your House: Head to the Hill 2019 We declared Brain Tumor Awareness Month 2019 as Brain Tumor ACTION Month (BTAM). As part of our effort to not only raise awareness, but to drive action that results in positive change for the brain tumor community, we themed the first week of BTAM as “Public Policy Advocacy Week” as we held our annual Head […] May 10, 2019
Public Policy and Brain Tumor Advocacy Updates From September 2018 Below are highlights of news and developments in brain tumor advocacy and public policy compiled by NBTS Research & Advocacy Manager Kacey Troy Ribnik and Director of Advocacy Lainey Titus Samant: New Increases for Medical Research Funding Congress recently passed a Fiscal Year 2019 (FY19) spending bill that includes increased funding for medical research. This action continues a […] October 3, 2018
#WhyNotDevin: Turning Pain into Hope for Families Christine Suau shares the story of her son, Devin, and the nine months her family spent treating his brain tumor. She talks about the rallying of a country to the cause of curing DIPG with the #whynotdevin social media campaign, the cost of care, and doing more for brain tumor research and families facing this […] September 28, 2018