Lindsay Claire is the type of mom who would climb a mountain if it meant helping her son, Ronan, who is affected by EEC syndrome. And climb a mountain height she did – all in an effort to raise money for the NFED. She shares their creative approaches and the key to their fundraising success.
The Fenoglio / Fodor family is showing their son Jackson how proud they are of him by volunteering. They believe in supporting your family. And for them, the NFED is family.
Despite the crazy year of quarantine that 2020 was, numerous NFED volunteers still found ways to raise money and awareness for the NFED mission. Find out how you can get creative and get involved!
If you are related to an NFED staffer, there’s a good chance you have volunteered for the Foundation. Read about one husband who’s gone the extra mile to help serve our mission.
Ava Nawrocki is a spirited, water lover who happens to be affected by A.D.U.L.T. syndrome. Parents, Erin and Tyler, share what motivates them to help Ava by volunteering for the NFED.
Jill Radley has spent the last few decades as her son’s biggest cheerleader and advocate. But, she recently used her voice to advocate and tell HER story with ectodermal dysplasia. A teacher at heart, she’s sharing her wisdom with students, other parents and women about the attitude to take when life hands you challenges.
Two genetic counseling students gained a valuable education when they volunteered to help families with ectodermal dysplasias. Their work was a win-win for the NFED and for them.
Our volunteers mean so much to us! With the help of three graduate students, our latest endeavor, the Unknown Project, has reached so many NFED members. We’ll tell you a little bit about the Unknown Project, and how these amazing individuals are helping families get a diagnosis.