New Guide to Help With Your HED Baby’s First Year

We’re excited to share with our community a new guide to help families navigate the first year of life for their baby affected by hypohidrotic ectodermal dysplasia (HED). It’s a wonderful resource whether HED runs in your family or you’re brand new to the disorder.

Raising a Strong Daughter with HED

Leah Steenson was worried and scared when her daughter was diagnosed with ectodermal dysplasia but that all changed when she found the NFED. Find out how she’s teaching her happy kindergartener to speak up for herself and explain her condition.

Underrated Basketball Star with HED Excels on the Court

Jacobi Sebock’s killing it on the basketball court and getting attention from the likes of NBA player, Steph Curry. He excelled in both basketball and track his senior year, not letting his inability to sweat hold him back. Watch this All-State athlete dunk and find out the big dreams he has.

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.