We salute families in three states for their incredible events benefitting the NFED.
We love when new volunteers step up to help the National Foundation for Ectodermal Dysplasias (NFED)! This month, we shine the spotlight on two genetic counseling students who are helping us with the Unknown Project.
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 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!
Olivia Daniels has faced many challenges in her 22 years. She learned to channel her feelings and experiences into acts of service and kindness. She’s an amazing creative force for good! Find out how this pageant champion is using her platform to raise awareness of ectodermal dysplasias and serve others.
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.
Aubrey is a creative who is leading our At Home Edition of Kays’ Kids Camp and Teens Program. As a life-long member of the NFED family, she knows first-hand how important it is for kids with ectodermal dysplasia to connect and have fun.