This Erdheim-Chester Disease Awareness Week, we’re honored to introduce you to Edith and Mike Watters, a remarkable couple whose journey reflects the courage, resilience, and creativity of our community.
Edith is living with Erdheim-Chester Disease (ECD), an ultra-rare and often misunderstood condition. By her side every step of the way is her husband and caregiver, Mike. Together, they have found strength not only in each other but also in their desire to make a difference for others living with ECD.
In the video below, Edith and Mike share their story and highlight one of their most significant contributions to the ECD Global Alliance: their annual Wine Survivor fundraiser. Each year, this fun and spirited event brings people together, raises awareness, and—most importantly—provides critical funds that fuel research and support for patients and families around the world.
Why Fundraisers Matter
Every dollar raised goes directly toward advancing research, improving patient resources, and strengthening our global community. For a rare disease like ECD, fundraisers are not just events—they are lifelines.
The Watters family reminds us that fundraisers can take many forms: from wine raffles and bake sales to community walks, trivia nights, and online challenges. The key is creativity, passion, and the belief that small actions can spark big change.
How You Can Help
We’d love to see more fundraisers inspired by Edith and Mike’s dedication! If you’re looking for ways to get involved:
- Host your own fundraiser—big or small, every effort makes an impact.
- Get creative—think about what your friends, family, or community would enjoy.
- Share your ideas with us! Your event might inspire others to do the same.
Together, we can keep the momentum going and ensure no patient faces ECD alone.
Watch Edith and Mike’s video, then tell us: What’s your fundraising idea? Let’s keep building hope—one fundraiser at a time.