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

The EHE Foundation Giving Tuesday Bifold 2019

EHE Informational Bifold

By The EHE Foundation | November 28, 2018 | Comments Off on EHE Informational Bifold

During this past week, we have featured several touching stories of those affected by EHE (see below). These stories have one thing in common, which all EHE patients can relate to: there are no standard treatments for EHE. Money raised by The EHE Foundation during #Giving Tuesday (Nov 27th) will address this common issue and […]

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Fight EHE Giving Tuesday Graphic

Day of Giving – Tuesday, November 27, 2018

By The EHE Foundation | November 21, 2018 | Comments Off on Day of Giving – Tuesday, November 27, 2018

#GivingTuesday is a global movement to celebrate and encourage giving after Thanksgiving, Black Friday, and Cyber Monday. We are thrilled to announce that donations to The EHE Foundation will be DOUBLED on #GivingTuesday (Tues, Nov 27th) by our generous supporters. This is your chance to double your impact in helping those affected by this extremely rare cancer […]

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Stay up to Date on EHE by Reading The Pledge: 14th Edition

By The EHE Foundation | October 11, 2018 | Comments Off on Stay up to Date on EHE by Reading The Pledge: 14th Edition

Click here to read the Pledge, 14th Edition

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3rd Annual EHE Virtual 5K Run/Walk

By The EHE Foundation | September 10, 2018 | Comments Off on 3rd Annual EHE Virtual 5K Run/Walk

The EHE Foundation hosts an annual run/walk for all ages and abilities in April, which is EHE awareness month. This event is “virtual”, which means it can be done anywhere the participant is located.  Participants are asked to complete the 5K during the last month of April.  Registration includes a t-shirt, race bib, bracelet, and […]

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Giving Tuesday

Giving Tuesday

By The EHE Foundation | August 30, 2018 | Comments Off on 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 […]

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Birthday Cake

Birthday Fundraisers Hosted by Facebook

By The EHE Foundation | August 12, 2018 | Comments Off on Birthday Fundraisers Hosted by Facebook

Supporters continue to celebrate their birthdays (and other special occasions) by creating a fundraiser on Facebook to support The EHE Foundation. Facebook allows supporters to easily create the event, share their story, invite friends, and track their progress toward their goal.  This convenient online tool has allowed many of our supporters to increase awareness while […]

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Brian Frank

A Day of Fun Celebrating the Life of Brian Frank

By The EHE Foundation | August 10, 2018 | Comments Off on A Day of Fun Celebrating the Life of Brian Frank

Brian Frank passed away from EHE on September 2, 2014 at the age of 28. Brian had only been sick for about 6 months and was not properly diagnosed until he passed.  His family and friends, led by his mother, Darlene Frank, and his sister, Angela Osborn, organize an annual event in Brian’s memory, which […]

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