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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.

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