Katherine Watts is a two and half year old little girl in Virginia who’s going places. Figuratively and literally. This little lady is in constant motion and is also quite the fighter. Since she was in the womb, she’s had a team of doctors who care for her many complex symptoms caused by Goltz syndrome. Learn about her challenges and what her parents had to learn quickly.
Celebrating 40 Years with Our Family
The 2022 NFED Family Conferece was a great success. Every year, the NFED invites the families it serves to convene at the conference to learn and most importantly, to connect. We laughed, we cried, we danced, and we can’t wait to see you next year!
Things to Do in the Lou at Family Conference
If you are coming to the National Foundation for Ectodermal Dysplasias (NFED) this July— and who isn’t?!— you may want to add some extra days to your trip to see the sights in St. Louis. Make it a family vacation! The NFED office is located just across the Mississippi river in Fairview Heights, Illinois. Here are our tips for where to go and what to eat when you visit our hometown.
Keeping You Safe and Healthy at the Family Conference
The excitement in the National Foundation for Ectodermal Dysplasias (NFED) office is beyond wild! Finally, after two long years of not holding a Family Conference, fighting the ongoing pandemic, and social distancing, we are finally going to reunite our family. It’s critical that we do everything we can to keep you healthy at Conference. Please read what our Scientific Advisory Council and staff are asking of all who attend.
8 Reasons to Attend the NFED Family Conference
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.