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 the brain tumor community.
This year’s NBTS “Head to the Hill” event will be conducted virtually due to the Covid-19 pandemic; each part of their “ask” of Congress, or support for policy and legislation, impacts the childhood cancer community from NIH/NCI to funding for the Childhood Cancer STAR Act and the Department of Defense’s Peer Reviewed Cancer Research Program.
Jenica Castillo-Harden joins us from Gresham OR to share her story of advocacy with National Brain Tumor Society; her son Levi was afflicted with DIPG and lost his life to this deadly pediatric brain tumor, as brain cancer is the leading cause of cancer-related death in children. Jenica shares why Brain Tumor Awareness Month is so important for kids with cancer, and about her joining the fight to advocate for House Resolution 114 which designates May 17 to honor children with brain cancer with DIPG Awareness Day.