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Ependymoma Survivor Inspires Action at Head to the Hill Shawn W. never imagined his brain tumor experience would lead him to Capitol Hill, sitting across from a congressman and making a direct impact on legislation. But in May 2024, that’s exactly where he found himself — telling his story, advocating for the brain tumor community, and witnessing firsthand how personal experiences can drive real […] March 18, 2025
New Brain Tumor Clinical Trials: April – October 2024 It can be hard to keep track of new clinical trial opportunities opening across the United States. There are many clinical trials actively enrolling patients. This report provides a summary of the studies that have recently opened or started recruiting since our last report for patients with a primary brain tumor. Follow the hyperlink for […] November 7, 2024
Notes of Courage: Kai’s Childhood Cancer Story Eleven-year-old Kai C. sits down at his piano and masterfully plays his own composed song. The elementary student with an ear for music amazes his mother, Kari, as he improvises and creates pieces. With how effortlessly he moves over the keys, it might be hard to believe that Kai has experienced two recurrences, seven surgeries, […] August 26, 2024
New Brain Tumor Clinical Trials: January – March 2024 It can be hard to keep track of new clinical trial opportunities opening across the United States. There are many clinical trials actively enrolling patients. This report provides a summary of the studies that have recently opened or started recruiting (January 1, 2024 – April 9, 2024) for patients with a primary brain tumor*. Follow […] April 12, 2024
Pediatric Ependymoma Patient’s Attitude Inspires Community Two-year-old Kevin M. lies in his hospital bed watching his beloved Puppy Dog Pals show, oblivious to the monitors beeping around him as a pediatric patient with ependymoma. His parents, Danielle and Duane, are nearby, trying to keep the toddler entertained between the pokes and prods that come with being in the hospital. Kevin’s nurse […] September 28, 2023