Morgan Rigsby is the kind of mom who wants to model the behavior she wants her kids to have. That’s why she’s become a passionate advocate for the Ensuring Lasting Smiles Act. In our Volunteer Spotlight, Morgan talks about what volunteering has taught her, how she celebrates the small victories with her son, and why you need to be open to sharing your story.
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.
Marathon runner Adam Viccaro shares his four rules for overcoming challenges – like not sweating – to accomplish more than you ever thought possible.
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!
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!
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!
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.
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.