Our Baby Rocker and King of Spreadsheets

From rocking babies at the Family Conference to serving as interim executive director, Anil Vora has done it all for the National Foundation for Ectodermal Dysplasias in the last 30 years. We thank him for his unparalleled commitment and Board leadership.

Our Hero, Every Day

Finally getting a diagnosis of hypohidrotic ectodermal dysplasia for their 13-month-old daughter was a relief for Sam and Neil Gansebom. But, they still had all of these emotions. Where would they turn? What should they do? Read about how they are coping and what they are doing.

Our Family’s Life-Changing Day

X-rays showed that he would have no teeth at all on the bottom front, and very few elsewhere. How could that be? Read how the Williams family found a diagnosis and a new family.

Teen Coder Inspired to Volunteer

A teenager finds the National Foundation for Ectodermal Dysplasias (NFED) online and offers his talents to raise awareness. An expert coder, this bright young man learns the impact one person can have.

A Whirlwind

Volunteers helped us run every aspect of the 2018 National Foundation for Ectodermal Dysplasias Family Conference in Portland, Ore.

Tales of the Fire Breathing Dragon

Christine Gottschalk found it heard to hear that her perfect son had ectodermal dysplasia. Worse was learning insurance wouldn’t pay for his care. It made no sense to her that some day, her son may have to choose between paying for his dental care or paying for a college education. She decided to take action and invites others to advocate with her.

I’ve Often Felt Odd

Aubrey Vora has spent her lifetime attending NFED Family Conferences. In her family’s journey with ectodermal dysplasia, she learns about the many ways to be human, being a member of the tribe and how you can impact someone’s life simply by showing up.

We Celebrate Service.

April is Volunteer Appreciation Month. A time to recognize, thank and celebrate volunteers. We respect and love our Volunteers yearlong but this is your special month to cheer you on for all you have done and do for those affected by ectodermal dysplasias and the NFED. We celebrate your service. It has become even clearer…