Volunteering Is Who I Am

Volunteering for Dr. Kathleen Motil is as natural as sunrises. Learn how she’s spent 20+ years helping families with ectodermal dysplasias learn about nutrition as a volunteer for the National Foundation for Ectodermal Dysplasias.

My Son Has Only Six Teeth

Sheltered as a child because of ectodermal dysplasia, Beth Orchard is raising her kids differently. This advocate is giving her children the same opportunities as kids who can sweat and eat normally. She’s taking bold steps to make a difference and wants you to join her.

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.

Why I Advocate

Kerri Fasulo is teaching her daughter how to use her voice to create positive change. Find out what they doing to help you and your family.

We want to thank you.

In recent years, there has been a growing trend to create a “Gratitude Jar” as a visual reminder of the wonderful things in our lives. Every day (or as often as possible), you put in a note about something that happened that day that gives you gratitude and thanks.  At the end of the year,…

Children Don’t Need Teeth?

Kevin Koser doesn’t think he should have to explain to his son with ectodermal dysplasia that he can’t have teeth because health insurance companies don’t feel teeth are necessary. So, he’s taking action and getting others to join him in advocating for the Ensuring Lasting Smiles Act.

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.