Did you ever just want to go someplace where everyone accepts you? Then you need to go to the NFED Conference, says the Johnson family. They are “veterans” when it comes to attending Conferences. Having attended numerous events since 1998, they share their wisdom and ask you not why attend…but why not?
How Our NFED Family Came To Be
What was it like to be diagnosed with ectodermal dysplasia in the early 1980s? NFED founder, Mary Kaye Richter, looks back at the Foundation’s humble beginnings, its first decade of accomplishments and the extraordinary people and circumstances that fueled its success.
Alaskan Advocates Get 100% Support for ELSA from Their Legislators
Two Alaskan families have helped achieve an amazing feat. The Brubakers and Wentzels have every legislator in their state co-sponsoring the Ensuring Lasting Smiles Act (ELSA)! This month, we shine our volunteer spotlight on these Alaskans to celebrate their accomplishments and learn more about how they did it.
The Dickie Family’s Full Circle Moments with Ectodermal Dysplasia
John Dickie IV was a young adult when he attended his first NFED Family Conference in 1987. His eyes were opened when he saw older guys affected by ectodermal dysplasia who had families and careers. Their lasting impression made him and his family want to give back to the NFED family, too. Read about the Dickies’ ectodermal dysplasia journey, their love for the NFED, John’s adventures and the advice he has for parents.
Let’s Celebrate 40 Years of NFED Success!
The National Foundation for Ectodermal Dysplasias (NFED) turned 40 years old on December 24, 2021. Normally, we would have recognized this milestone throughout last year. But, the pandemic caused us to shift our plans. Find out what we all have planned for this celebration year!
Growing Up with the NFED: Meet Virginia
Virginia Higgins was just five years old when her mom, Fredia Shimchick, heard about a mom in the area who was looking for other families affected ectodermal dysplasias. Their family would be one of the first 12 families who called NFED their ectodermal dysplasia home. Find out about her love for the NFED family and why she gives back.
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.
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.