Caitlin Brown was skeptical when her mom, Suzanne, wanted to join her in running the Disney Half-Marathon to raise money for the NFED. But she knew, there was no telling Suzanne, who is affected by EEC syndrome, she couldn’t do something. Find out how this mom-daughter duo did.
For National Volunteer Month, the National Foundation for Ectodermal Dysplasias celebrates its volunteers for their 5,000 hours of service. It is mind boggling the tasks they accomplished to help the NFED and those affected by ectodermal dysplasias. Watch our tribute video and learn how you can volunteer to be a Social Media Ambassador, Advocacy State Lead or fundraiser.
Your life can take a different path, one you never expected in a matter of a moment. Debbie’s changed when her first grandson was born. Little did she know on that day she would become a volunteer for the NFED.
Did you know that you could volunteer and the National Foundation for Ectodermal Dysplasias could get paid for your hours? Many companies across the U.S. are starting volunteer grant programs. Learn what you need to do.
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.
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.
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.
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.