Forty Years of Driving Ectodermal Dysplasias Research

As we celebrate our 40th anniversary and reflect on the journey to this point, we can say with certainty that no other entity in the world has driven ectodermal dysplasias research more than the National Foundation for Ectodermal Dysplasias (NFED). It’s been our honor to lead. Yet, the gratitude goes to the families who volunteered for studies, the curious researchers who strived to make a difference, and the donors who funded the vision. Let’s look at four decades of advancing research!

Our NFED volunteers light the way!

Whenever the NFED has a need, our volunteers step forward and help. We want to let you know that your dedication and inspiration is essential to the work that we do—we simply cannot do it without you. THANK YOU! 

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!

U.S. House of Representatives Votes YES on the Ensuring Lasting Smiles Act

April 4th was an extraordinary day for families affected by ectodermal dysplasias and congenital anomalies!
You could almost hear the cries of victory and feel the joy of our advocates, families and staff who watched the live stream of the House of Representatives where they announced that ELSA had passed. Read about the exciting vote and what’s next for the bill in the U.S. Senate.

Got Change? Help Us Celebrate 40 Years of Impact!

The NFED has ambitious goals for its 40th anniversary celebration year. Becoming a 40th anniversary sponsor will ensure we reach our goals and create more impact.

Brave ELSA Advocates Pour Out Their Hearts to Legislators

Three hundred brave advocates from 46 states shared their heartbreaking stories with U.S. legislators at this year’s Virtual Advocacy Day on Capitol Hill. They talked about the numerous surgeries and ongoing treatments they or their child has needed and how insurance companies won’t pay for it. With the House voting on April 4 for ELSA, find out what you can do to help.

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.

Esteemed Dentist Dedicated 20+ Years to the NFED

We are saddened to share the news that one of our beloved volunteer dentists has died. Read how Dr. Tom Vergo donated his time and talents to the Foundation for more than two decades.