The 2025 Run, Walk & Roll for Hope brings together supporters from all corners of the globe in the fight to raise awareness for Erdheim-Chester Disease (ECD). For those participating virtually, your impact is just as powerful—and with a little creativity and planning, your experience can be just as meaningful and memorable as attending in person.
Here are five simple but effective ways to make the most of your virtual run:
1. Choose a Meaningful Route
Whether it’s your neighborhood, a favorite park, or a scenic trail, choose a route that resonates with you. Some participants plan routes that pass landmarks important to their loved ones, or places tied to special memories. Wherever you go, your steps carry purpose.
2. Personalize Your Gear
Wearing event-branded apparel or custom-made team shirts not only boosts morale but also invites conversation from curious onlookers. Add pins, signs, or ribbons in ECDGA’s signature teal and navy zebra stripe to visually represent your cause.
3. Go Social with Your Story
Social media is a powerful tool in spreading awareness. Share why you’re participating using photos, short videos, or daily updates. Let your followers know about Erdheim-Chester Disease, and include a link to your fundraising or team page so others can support your mission.
4. Run with a Virtual Team
Just because you’re not in the same city doesn’t mean you can’t move together. Coordinate a time for your team members to walk, run, or roll from wherever they are, and then connect online to share photos and stories. Many teams schedule video calls post-run to celebrate their efforts and reflect on what the event means to them.
5. Raise Awareness While You Move
Print and wear signs with facts about Erdheim-Chester Disease or carry a QR code that links to ECDGA’s website. These small touches can turn passersby into allies by educating them about a rare disease they’ve likely never heard of.
Participating virtually means you can bring the mission of the ECDGA to your own community in a very personal and powerful way. With every step, you’re creating visibility, fostering understanding, and contributing to a growing movement that believes no one affected by ECD should feel alone or unseen.
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.