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.
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.
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 […]Read More
#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 […]Read More
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 […]Read More
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 […]Read More
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 […]Read More
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 […]Read More