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.
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.
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.
April is Volunteer Appreciation Month! All of us at the National Foundation for Ectodermal Dysplasias (NFED) honor our 500+ volunteers who are the heart of our foundation. We value our volunteers all year long but April is a special month of showing our gratitude to you.
Dr Lisa Knobloch is a dentist who passionately cares about individuals affected by ectodermal dysplasias. For more than a decade, families have flocked to the NFED Dental Treatment Center she founded at The Ohio State University. Read about the extensive services and financial assistance they offer and what families have to say.