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Latest EHE News, Events and Research
Giving Tuesday
Giving Tuesday is celebrated each year on the Tuesday following Thanksgiving and after the widely recognized Black Friday and Cyber Monday. It is recognized as an international day of giving at the beginning of the holiday season and is fueled by the power of social media. The day known as “#GivingTuesday” proved to be a […]
Stay up to Date on EHE by Reading The Pledge: 11th Edition
Click here to read the Pledge, 11th Edition
Softball Tournament in Memory of Justin Herald
Stephanie Herald and Courtney Walters, along with other family and friends of Justin Herald organized a memorial softball tournament in his memory in Hailey, Idaho on June 3-4 2017. They had a spectacular event with outstanding community support, great weather, and a group of enthused players. Justin was a full-time fireman and paramedic, a certified […]
Running 100 Miles for EHE
Jimmy Crook started the 100 mile challenge many years ago, while he was deployed to Afghanistan as a way to pass time and get people motivated through the tough holiday month of December. It has morphed into a nationwide group on Facebook (#Run4) that raises money for charity, encourages others on their fitness journey, and […]
2nd Annual EHE Virtual 5K Run/Walk
Registration for this event is over, but if you are interested in purchasing EHE/Just Live merchandise, please contact us at [email protected]. For up-to-date information about this event, visit our Facebook event page: https://www.facebook.com/events/236969163428782 . We encourage you to upload pictures wearing your race shirt. The pictures can be taken before, during, or after the 5K. Your […]
Poker Tournament in Memory of Brian Frank Raises $11,000
Earlier this month, Angela Osborn, along with numerous family and friends, gathered for a night of poker in Washington in order to honor her late brother Brian Frank. Along with the poker tournament, a silent auction was held, T-shirts and sweatshirts featuring Brian’s initials and birthdate were sold, and at the end of the evening, a staggering $11,000 […]
Science Saturday: EHE Research Progress & Momentum
Join the EHE Foundation for a special Science Saturday on Rare Disease Day, February 28, 2026, 11:00 am – 12:30 pm ET. This virtual event is designed for anyone affected by EHE who wants an up-to-date view of the EHE research landscape. This free, interactive presentation will highlight Foundation-led research, global scientific advances, and the […]
Reflecting on 2025 and Looking Ahead With Purpose
For the global EHE community, 2025 brought challenges, resilience, and momentum. Grounded in connection and a shared commitment to progress in EHE, we look back with emotion, appreciation, and gratitude, and in 2026, we look forward with determination and hope.
Translating molecular mechanisms of EHE to improve patient outcomes
Scientists know that most EHE tumors are caused by specific genetic changes called gene fusions. In most people with EHE, two genes, WWTR1 and CAMTA1, are abnormally fused. In a smaller number of cases, a different fusion involving YAP1 and TFE3 is present. In a recent review published in Critical Reviews in Oncology/Hematology, the authors […]