Online Source for EHE Information, Research, Community & Donation


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EHE is a puzzling disease for patients, families and providers. Our goal is to provide caring support and information to those affected by this disease.

A new year is the perfect time to reflect on 2018 and look forward to 2019 with encouragement.

Thank you for being part of our EHE family.  We are amazed, inspired, and grateful that you continue to choose to stand alongside us in our commitment to fight EHE.  Your support helps us honor those we’ve lost by continuing to make progress in many facets of our foundation’s mission.

Thank you for being part of our progress.  Although we can’t list every great thing you’ve helped us accomplish in 2018, here are a few highlights.

Together, we:

  • initiated an ongoing multi-institutional international project to ultimately give doctors of EHE patients options for evidence-based treatments.
  • supported research of Dr. Rubin, an EHE expert and world-renowned pathologist and medical researcher of the Cleveland Clinic, who helped lead the trametinib drug trial and continue his ongoing efforts in EHE research.
  • increased awareness of EHE across the nation with supporters, agencies, and medical experts and connected hundreds of EHE patients with experts.
  • added two professionals to our all-volunteer working Board of Directors and increased our volunteer base of committed and compassionate individuals.
  • received a specified grant to hire a professional to ensure the foundation sustains long term capabilities for the future. We’ll introduce her early this year!
  • continued dialogue with experts to seek viable research projects using the most modern and advanced forms of medicine.  Our Advisory Board and research team continues to raise interest in EHE among top scientists.
  • were recognized by the nation’s sarcoma community and are now represented in a formal forum of collaborating sarcoma foundations, titled the Sarcoma Coalition.
  • successfully enhanced the scope of our two annual events.  Over 700 participants joined us on the virtual 5K in April and #GivingTuesday brought in over $87,000 in November!

With your support, we are focused, hopeful, and empowered to continue to make progress in 2019.

Our Annual 5K is only 2 months away!

We'd love for you to join us for this year's virtual 5K.  It will take place at the end of April, but registration will start sometime in February.  This 5K run/walk is for all ages and abilities.  It is also “virtual,” which means it can be done anywhere you are. Stay tuned for details including how to get involved, registration information, and what’s new with the 2019 5K.

Latest EHE News, Events and Research

EHE cancer The Pledge

Stay up to Date on EHE by Reading The Pledge: 11th Edition

By The EHE Foundation | January 1, 2018 | Comments Off on Stay up to Date on EHE by Reading The Pledge: 11th Edition

Click here to read the Pledge, 11th Edition

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Justin Herald

Softball Tournament in Memory of Justin Herald

By The EHE Foundation | June 4, 2017 | Comments Off on 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 […]

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David Petrisko

Running 100 Miles for EHE

By The EHE Foundation | May 10, 2017 | Comments Off on 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 […]

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2nd Annual EHE VIrtual 5K Run/Walk

2nd Annual EHE Virtual 5K Run/Walk

By Maggie Cameron | February 19, 2017 | Comments Off on 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 For up-to-date information about this event, visit our Facebook event page: . We encourage you to upload pictures wearing your race shirt. The pictures can be taken before, during, or after the 5K. Your […]

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Brian Frank

Poker Tournament in Memory of Brian Frank Raises $11,000

By The EHE Foundation | October 31, 2016 | Comments Off on 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 […]

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Smoothie King EHE cancer Mandy O'Connor

Smoothie King Raises Money in Memory of Mandy O’Connor

By The EHE Foundation | October 30, 2016 | Comments Off on Smoothie King Raises Money in Memory of Mandy O’Connor

Smoothie King in York, Pennsylvania, held its second fundraiser in memory of Mandy O’Connor on October 13. Sean and Nicky Krebs, Smoothie King franchisees and close friends of Mandy and Devin’s, once again donated 50 percent of their sales on what would have been Mandy’s 33rd birthday. Mandy died due to EHE on April 5, […]

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Hershey's EHE cancer

The Hershey Company Donates to EHE Research

By The EHE Foundation | October 30, 2016 | Comments Off on The Hershey Company Donates to EHE Research

The Hershey Company has made a generous donation to The EHE Foundation. The world-famous confections company in Pennsylvania gave $500 to support ongoing research efforts into the rare cancer. The Foundation would like to thank Hershey employee Serena Wang for the support. Serena was a personal friend of Mandy O’Connor, who died from EHE in […]

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