Archives for September 2022

Congrats to Kim Young for Finishing the Maine Marathon on October 2, 2022.

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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 community, including her family and friends, to either participate in the event or to donate to benefit The EHE Foundation. Participants had the opportunity to select from several events: 5K, 10K, half marathon, full marathon, or marathon relay. Kim ran the full marathon and crushed her goal race time.

As she raced, she wore a shirt with many EHE patients’ names on the back.  Kim said,

“This event is very personal to me. I ran the Maine Marathon not only to raise money for EHE research and create awareness for this rare cancer, but to represent every single patient across the globe.  EHE is unpredictable and can turn aggressive very quickly and I ran to represent every patient facing an uncertain future.”

Kim raised $1,125. We truly appreciate Kim’s continued support and encouragement to families affected by EHE.

ESMO 2022 Congress

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EHE champions were on the global stage on September 9th, at the ESMO2022 Congress in Paris, France. ESMO, the European Society of Medical Oncology, is a leading professional organization for medical oncology education and information. Dr. Silvia Stacchiotti, a leading EHE clinical expert (Italy), and Hugh Leonard, Chair of Trustees of the EHE Rare Cancer Charity (UK), spoke in a session entitled Ultra-rare sarcoma: Navigating an endless sea. Dr. Stacchiotti discussed the drugs and research needed to better treat ultra-rare sarcomas, and Hugh eloquently presented the importance of collaboration and partnership among patients, advocates, researchers, doctors, government, and pharma in the effort to find effective treatments for EHE as an ultra-rare cancer.

Denise Robinson, Director of Research for the EHE Foundation, and Jane Gutkovich both attended ESMO virtually. Denise commented, “Hugh has placed EHE patients and advocates on one of the world’s largest oncology stages and clearly points out that collaboration with patients, and EHE research facilitated by patients is essential to finding treatments and cures for EHE.”