Advocacy is Something We Are Meant to Do Together

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.

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!

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!

How Our NFED Family Came To Be

What was it like to be diagnosed with ectodermal dysplasia in the early 1980s? NFED founder, Mary Kaye Richter, looks back at the Foundation’s humble beginnings, its first decade of accomplishments and the extraordinary people and circumstances that fueled its success.

Awareness. Advocacy. Action.

February is upon us, and the National Foundation for Ectodermal Dysplasias (NFED) has a lot going on! In honor of Ectodermal Dysplasias Awareness Month (EDAM), please help us spread the word about these rare conditions and join us in raising up this incredible community through research, advocacy and more.

15 Ways to Help Your Child Get Ready for Dental Visits and Dentures

How do you help your little ones affected by ectodermal dysplasia prepare for all of the dentist visits they need? What can you do to explain and show them what getting dentures is going to be like? Check out our resources and suggestions for how to make your child’s experience at the dentist be a positive one.

Team Nikko Finds Home in the NFED

Dave Reidenouer is the kind of dad and grandpa who jumps in to help when his family needs him. For him, family means, “coming together to overcome obstacles and challenges, working together to do fun and good things.” And that’s exactly what his family has done since their first grandchild, Nikko Vecchini, was born affected by hypohidrotic ectodermal dysplasia. Read how the NFED became their lifeline.