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.

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.

Volunteers Assist The Unknown

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.

Meet Your Kids Camp Director!

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.

A Grandma’s Greatest Passion

At the NFED, we hold a special place in our hearts for our volunteers. Donna Garrett-Miller is a proud volunteer who has left her mark on the ectodermal dysplasias community after just one year since her grandson was diagnosed with AEC syndrome.