The EHE Foundation

Kim Young is running the Maine Marathon on Oct 2nd!

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Kim was diagnosed with EHE in March 2021, and this is the second time she is running 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.

Would you like to be a part of this amazing event? You can donate to Kim’s team or join her team and participate in the these events:
· 5K
· 10K
· Half Marathon
· Full Marathon
· Marathon Relay

Donate or sign up for an event at https://runsignup.com/fight-ehe
All donations to Kim’s team will benefit The EHE Foundation.

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.”

The EHE Foundation Advisory Board Annual Meeting

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The EHE Foundation’s Advisory (Ad) Board met with the Foundation’s research team in June for their annual meeting. The Ad Board is composed of nine renowned clinicians and researchers who generously give their time and talents to advise The Foundation, in addition to the countless hours they spend during their ‘day jobs’ with patients, research projects, and reports. Members include Dr. Silvia Stacchiotti, Dr. Scott Okuno, Dr. Denise Adams, Dr. Vinod Ravi, Dr. Brian Rubin, Dr. Breelyn Wilky, Dr. Cameron Trenor, Dr. Jonathan Trent, and Dr. Bill Tap.

Denise Robinson, EHE Foundation Director of Research, chaired the meeting which included the Ad Board and the Foundation’s research committee members. The agenda focused on reviewing Foundation’s growth and strategic planning, the patient-led research initiatives of highest priority including the EHE Biobank and EHE Global Patient Registry (in development). Additionally, the group discussed other strategic projects including a prospective observational study, and the 2022 Research Grants Program. Significant time was spent discussing the importance of the biobank and registry participation among EHE patients, which are critical to learning more about EHE biology, potential treatments, and patients’ experiences.

Denise commented that “this meeting of these great minds is essential to keeping the Foundation focused on moving our mission forward and grounded in our pursuit of better treatments and a cure for EHE. We are eternally grateful for the time and talents the Ad Board gives to the EHE community. They are awesome champions of our mission!” Jenni Kovach, President of The EHE Foundation and also an EHE patient, attended the meeting and was thrilled to welcome everyone while reiterating “we need you…as a patient, and the Foundation needs you and we are so thankful that you choose to be here today.”

To learn more about The EHE Foundation’s Advisory Board, click here.

Carmela Valdivieso

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What do you want others to know about EHE?

“Getting to know other cases through the EHE Foundation, I realized that, even though all cases are very different, uncertainty is something we all share. I have my hopes on the community built around EHE, where I no longer feel alone and trust that there will soon be a cure. I try to live my life one day at a time. My daughters give me the strength I need to feel that there is much more life ahead of me. I would like to say to all of you: don’t be passive patients. Be active protagonists in the search for sympathetic doctors who make you feel confident and sure that they will be able to control, improve and overcome this disease. And to remind you that the EHE Foundation will support you always. You are not alone anymore.”

~ Carmela Valdivieso