Raising awareness for a rare disease like Erdheim-Chester Disease (ECD) takes more than facts and figures—it takes people. It takes passion, imagination, and community spirit. And during Volunteer Month, we’re thrilled to recognize a very special kind of volunteer: the fundraisers who turn everyday events into life-changing impact.

At the Erdheim-Chester Disease Global Alliance (ECDGA), our mission depends on the generosity and creativity of those who believe in it. Whether it’s a bake sale, a fitness challenge, or a game night with a purpose, every dollar raised by these volunteers helps fund research, support families, and expand outreach across the globe.

Everyday Actions, Extraordinary Impact

What do yogurt, wine, pampered kitchens, and running shoes have in common? They’ve all been used to support the fight against ECD. Our volunteer fundraisers have found meaningful and often fun ways to give back—and the results are making a real difference.

Some standout efforts include:

• 🍷 Wine Survivor Game – A friendly competition with bottles of wine at stake and support for ECDGA at the core.

• 🍦 Culver’s Yogurt Sales – A local favorite turned into a sweet support system.

• 🍽️ Pampered Chef Fundraisers – Cooking with purpose, where meals made memories and donations.

• 🏃‍♀️ Team Leaders in the Fun Run/Walk/Roll – Moving for a cause, and bringing communities together along the way.

These events may seem small on the surface, but collectively, they build momentum. They raise awareness in new circles, draw in first-time supporters, and create an environment where fundraising feels less like a task and more like a celebration of hope.

Volunteers Who Go the Extra Mile

It’s not just about the money raised—it’s about the message. Volunteer fundraisers remind the world that ECD isn’t invisible. Every t-shirt sold, step walked, and recipe shared is a powerful act of advocacy.

Many of these fundraisers are organized by patients, caregivers, or friends of someone living with ECD. Often, they happen quietly—behind the scenes, in local communities, or online among friends. But their effect ripples far and wide, supporting everything from research grants to patient travel assistance to expanded educational tools.

And with our upcoming May conference in Barcelona, the impact of these efforts will be visible in real time—from the resources available at the event to the programs supported by fundraiser dollars.

Why Their Efforts Matter So Much

Because ECD is so rare, it doesn’t benefit from large-scale fundraising machinery. We don’t have hundreds of sponsored walks or annual telethons. What we do have is something even more meaningful: a community that steps up with heart, initiative, and determination.

Volunteer-led fundraisers have helped:

• Launch research partnerships

• Improve virtual support platforms

• Provide resources to newly diagnosed patients

• Elevate ECD on the global rare disease stage

Their work fills the gaps where institutional funding hasn’t yet reached—and it ensures that no effort, no matter how small, is wasted.

Let’s Keep the Momentum Going

As we shine a light on these incredible volunteers, we also extend an open invitation: you don’t have to be a professional to make an impact. Whether it’s hosting a trivia night, selling handcrafted goods, or joining a local run with ECDGA in mind—every act of fundraising brings us one step closer to greater awareness, stronger support, and more research.

Let’s continue building on this spirit as we prepare for Barcelona 2025. The passion behind our volunteers will be on full display, reminding everyone that progress is powered by people.

Thank You, Fundraising Heroes

To the organizers, donors, participants, and supporters: thank you for making hope tangible. Thank you for believing that a yogurt cup or a 5K could change lives. And thank you for proving, time and again, that when we act together, we go farther.

You are not just raising money—you’re raising awareness, building community, and showing the world what rare disease resilience looks like.

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The Erdheim-Chester Disease Global Alliance (ECDGA) does not provide medical advice, diagnoses, or treatments. All content is for informational purposes only. Please consult with a healthcare provider for medical concerns.