At the heart of the National Foundation for Ectodermal Dysplasias (NFED) community are personal stories of courage, growth, and connection. These stories are also testaments of a strength rooted in resilience.
For Karl, president of the Board of Directors, living with an unknown type of ectodermal dysplasia meant grappling with the emotional toll of not having hair. During his teenage years, he struggled with confidence and fitting in with his peers and teammates. He chose to wear a wig for most of his youth.
Then, on his wedding day, he embraced his true self—an empowering moment that symbolized acceptance and love.
“I got rid of the wig,” Karl shared, “which was a liberating moment for me. Obviously, my wife loved me, so I was like, I’m done. That was a big thing for me.”
This sort of anecdote is what Karl often refers to as a “magic moment,” when connection, confidence, and joy intersect. For people who are affected by ectodermal dysplasias, these moments fuel their story of resilience. They are also the running thread for all who serve on the NFED Board of Directors.
Empowered to Advocate for Your Own Healthcare
Marianne, who joined the board in 2016, has her own story of resilience. She remembers when her son, Peter (with family in featured image above), was adopted from northern China at just 11 months old. Born with a cleft lip and palate, doctors eventually diagnosed Peter with Clouston syndrome, a type of ectodermal dysplasia.
“We knew nothing about ectodermal dysplasia, nothing,” Marianne shared. “When Peter started to get towards teenage years, we believed this was a good time to bring him to an NFED conference, because he could find other kids like him. It gave him a place to belong. It empowered him to get enough information about his own health to be able to talk with confidence.”
This was another story of hope. A magic moment facilitated through the NFED family.
Providing Children with Their First Set of Dentures
Dr. Tim Wright, a pediatric dentist involved in helping diagnose and treat children and their families affected by ectodermal dysplasias, has served on the Board since 2017 and on the Scientific Advisory Council since 2006. He knows firsthand the magic moments that happen when children are able to have their first set of dentures.
“Children are developmentally missing most of their teeth and report being teased at school about their appearance,” Tim said. After he attended a conference sponsored by the NFED, Tim became one of the most active supporters in the ectodermal dysplasias research and treatment discovery.
“Providing children with a smile is incredibly rewarding and I’m fortunate to serve this community.”
Finding Community through Advocacy
Soren is one of the newest board members at the NFED. Born with an undiagnosed type of ectodermal dysplasia, Soren did not become active in the organization until young adulthood.
“A lot of people, not only do they suffer from some kind of medically inhibiting condition, but also it can be isolating,” Soren shared. “As soon as I got involved with the NFED and met the community, I felt like I became a part of a family. I found that community I didn’t have as a kid.”
Empathetic to both the isolation many individuals affected by ectodermal dysplasias face and the financial burden of vital treatments, Soren became a passionate advocate for the Ensuring Lasting Smiles Act (ELSA). ELSA strives to secure insurance coverage for medically necessary treatments for individuals with ectodermal dysplasias. The collaborative efforts of all involved in these efforts is a collective story of resilience filled with countless magic moments.
Children Born Able to Sweat as Stories of Resilience
These stories build upon the legacy of the late Mary K. Richter, who founded the NFED in 1981 after advocating for her son, Charley. Charley was born with what is now known as x-linked hypohidrotic ectodermal dysplasia (XLHED), the most common type of ectodermal dysplasia. Now a board member and one of the more beloved members of the NFED family, Charley reminds us of the NFED’s humble beginnings that started with letter writing to dentists from his mom’s farmhouse kitchen table.
“We’ve come full circle and they’re doing a XLHED clinical trial globally,” Charley celebrated. “They’re injecting a protein in utero. They discovered the protein the baby is missing due to XLHED, that I’m missing, to create sweat glands. And they’ve had several babies now born and they sweat. It doesn’t cure the child of all the symptoms of XLHED. But if we can take one of those issues off the board, that is a giant step forward.”
For the six families whose babies have been born with the ability to sweat, this is another magic moment.
These stories highlight the NFED’s transformative impact. Donations fuel this progress, providing cooling vests, dentures, and family connections while supporting research to improve lives.
As Karl puts it, “These kids need each other. We all need each other. Your donations allow us to connect families, fund research, and bring solutions to life. I’m all in.”
Together, we can do all of this and so much more. Your generous partnership and support of the NFED changes lives and mobilizes more magic moments. Donate to the NFED mission today.
