Underrated Basketball Star with HED Excels on the Court

Jacobi Sebock’s killing it on the basketball court and getting attention from the likes of NBA player, Steph Curry. He excelled in both basketball and track his senior year, not letting his inability to sweat hold him back. Watch this All-State athlete dunk and find out the big dreams he has.

AEC Syndrome Doesn’t Stop Us from Giving Back

The Shimchick family has faced many challenges caused by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome. Denyse and her three children are all affected. Together, they have been through 217+ surgeries! Despite their medical needs, the family has made volunteering a key part of their lives. Find out how they strive to help others.

Pushing the Limit: Running a Marathon Without Breaking a Sweat

Growing up, Adam Viccaro wanted to be like his dad, who was a marathoner and Ironman. Determined, Adam found ways to adapt to his inability to sweat due to hypohidrotic ectodermal dysplasia (HED.) He shares what he learned in training his body and mind to do the unthinkable: running a marathon when you can’t sweat. His incredible story will inspire you to believe you can do anything!

The NFED Continues to Expand in Its First Decade

Our conversation with NFED founder Mary Kaye Richter and her son, Charley Richter, continues as we look back at the NFED in the 1980s. They share what it took for the Foundation to grow and thrive and the people that made it happen. Read how Richter’s can-do spirit drove the NFED’s success and inspired parents to expect great things for their children.

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.

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.

Where Can You Turn When You Need Support? The NFED Of Course!

At 18 months old, Asher wasn’t showing signs of teeth development. Dental x-rays confirm that he has two upper teeth that have not ruptured, and those tooth buds are conical in shape. He has no other tooth buds present. This otherwise happy and healthy little blonde boy also has sparse hair, eczema flare ups, and he can’t produce sweat from his neck up. All classical signs of hypohidrotic ectodermal dysplasia (HED).

How Hair Made Me Confident

Charlotte Smith knows what it’s like to be a young woman with thin hair. Learn her best hair tips and how having hair has changed her.