As a patient advocacy organization dedicated to a rare condition, our community, is spread accross the globe. As such, many of our gatherings, events and support groups are held virtually or in specific cities where a community member has a network of support.
Families from across the globe have organized blood drives, running, walking and biking events, golf, bowling, and washer tournaments, chili cook-offs and food tasting galas. These events have allowed families to promote community awareness, remember a lost loved one, meet other affected families, and contribute to meaningful programs and research initiatives.
Our community is strong, resilient, creative, and motivated to #endAFE. Check out our calendar of events and support offerings below. If you are interested in creating a fundraising or awarness event or need help getting started, we’d love to help! Contact our Community Liaison, Katy Imbrogno firstname.lastname@example.org, to set up a call.
Thank you so much to those who helped make the following past events possible.
- Tango of the Vines
- Love for Meg Memorial Golf Tournament
- Runnin’ for Rocco
- Paula Mounts Krejci Memorial 5K
- Micki and Mason Memorial Washer Tournament and Crawfish Boil
- Leslie Patterson Gaston Memorial Chili Cook Off
- Tara’s Reason Memorial Walk
- Natalie Cook Clothing and “For Nats” Annual Memorial Campaign
- Mission For Molley Molley Cartwright Memorial Golf Tournament
- Journey for Jules