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With the generosity, heart, and determination of the EHE community and the EHE Foundation Board of Directors, we raised more than $155,000 — and counting — for EHE Research this Giving Tuesday! In a world with so many urgent needs, we are profoundly grateful for how this community continues to show up for one another to advance our mission of finding treatments and a cure for EHE. Thank you!
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Latest EHE News, Events and Research
An Update from Memorial Sloan-Kettering Cancer Center – Investigating the Early Molecular Mechanisms of WWTR1::CAMTA1 and YAP1::TFE3 Gene Fusions in Driving the Pathogenesis of EHE
The EHE community, which includes cancer patients and their families from around the world, benefits from the world-class innovative research that takes place at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City (US). In 2019, MSKCC received a $1 million private donation to establish an International Center of Expertise in EHE and since that […]
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Cancer Identity Session #3: Integrating Cancer Identity Into the Self
Mark your calendars for our November Community Connection with Drs. Vesel and Baechler! Join us for the third session on “Who am I now? Integrating the cancer identity into the self.” All are welcome to join, even if you missed previous sessions! This session will NOT be recorded. If you haven’t yet – please complete […]
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Immunotherapy: how it works and its role in the treatment of EHE
Jane Gutkovich will go over some basic principles of various types of immunotherapy, available predictive markers to patients response, and current knowledge of immunotherapy efficacy in EHE. Session Recording
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The EHE Foundation Funds Fellowship Travel Grants
In June, the EHE Foundation provided two Fellowship Travel Grants supporting young investigators’ participation in a workshop entitled “YAP/TAZ and TEAD: At the Crossroads of Cancer.” The workshop is hosted annually by the Telluride Science Research Center (TSRC) and this year was co-led by notable EHE researchers and advocates – John Lamar, PhD, Albany Medical […]
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An important message from Jenni Kovach, President, The EHE Foundation Board of Directors
I am writing today to share an organizational change to The EHE Foundation. After four years as a part-time contractor, Medha Deoras-Sutliff has ended her engagement with the foundation to pursue other opportunities. Medha will continue to provide her services to the foundation until the end of November to ensure a smooth transition. Medha came […]
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Congrats to Kim Young for Finishing the Maine Marathon on October 2, 2022.
Kim Young was diagnosed with EHE in March 2021, and Oct 2nd, 2022 was the second time she ran the Maine Marathon in support of The EHE Foundation. She is a champion for creating awareness for EHE, and we are grateful for her support. Kim teamed up with the Maine Marathon to allow the EHE […]
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The EHE Foundation Welcomes Kristianne Oristian, PhD, as Director of Research & Engagement
The EHE Foundation is proud to announce the appointment of Kristianne (“Kristi”) Oristian, PhD, as our new Director of Research & Engagement. In this role, Kristi will work closely with Executive Director Denise Robinson, who previously led both organizational and research strategy, to advance the Foundation’s mission and strengthen our growing impact in the global […]
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Advancing EHE Research on the Global Stage: Highlights from CTOS 2025
The EHE Foundation had the privilege of attending the CTOS 2025 Annual Meeting, held November 12-15, in Boca Raton, Florida. The Connective Tissue Oncology Society (CTOS) is a global, professional medical organization of clinician-scientists, translational researchers, and patient advocates united by a single goal: advancing treatment of sarcomas. For the EHE community, this annual gathering […]
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The Pledge: Edition 42, Q3 – July-September, 2025
Publication of The Pledge quarterly newsletter is led by the EHE Rare Cancer Charity (UK). EHE patient advocacy groups from around the globe provide content including research news, patient and fundraising stories, and much more. Click here to view the most recent edition of the online EHE newsletter, The Pledge.
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