As a self-described, shy, introvert, Sarah Ward could never have imagined that she would be meeting with Congress to talk about her family’s rare genetic disorder. The passionate advocate shares her journey and why she has found the strength to speak up!
The Value Of One. The Power of Many Voices.
It’s Volunteer Appreciation Week! We celebrate the incredible people who stepped up during a pandemic and helped us advance our mission. Learn what that looked like, what we are planning next, and how you can add your voice!
Sharing Mighty Ronan’s Story Makes All the Difference
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.
This Will Change You in the Best Way
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.
How You Can Volunteer in a Pandemic
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!
Volunteer Spotlight – Tom Richardson
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.
Showing Ava She’s A Part of a Strong Community
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.
This is My Normal
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.