Dad’s daily civics quizzes transformed a young girl’s mornings into learning adventures, ultimately leading to a national championship and a life-changing scholarship. This inspiring story of a young girl’s dedication and achievement will leave you amazed.
Magic Moments, Stories of Resilience at the NFED
Magic moments happen all the time at the NFED! Marianne from the Board recalls adopting her son, Peter, from China. Affected by Clouston syndrome, Peter attended his first NFED Family Conference as a teen. Find out how it changed him. Plus, read about other Board members’ magic moments.
The NFED Is Family: Together We Can Do More
The National Foundation for Ectodermal Dysplasias (NFED) is family! That’s a common refrain whenever we talk with someone connected to our mission and vision. And, it’s true. NFED staffer Kelley Atchison talks about the joys of family connections and the frustration of not having all of the answers. But, there’s hope, knowing we can do more together!
Living with EEC: A Journey of Resilience, Art, and Advocacy
Greta Geiger knows living with a rare genetic condition can be a challenge. It also can shape your journey in unexpected and profound ways. A graduate from Millsaps College, where she received an art scholarship, Greta is both an award-winning sculptor and an aspiring genetic counselor pursuing a Masters in Medical Genetics and Genomics at…
Volunteer Jordan: A Voice for Ectodermal Dysplasias
Jordan Kahn, a passionate advocate for the NFED, shares his inspiring story of supporting his daughters with hypohidrotic ectodermal dysplasia (HED). As a state lead for Maryland, he’s dedicated countless hours to raising awareness and advocating for legislation that impacts those with ectodermal dysplasias. Discover why Jordan is so committed to the NFED and how you can join him in making a difference.
From Fragile to Thriving: The First 15 Years of Living with AEC Syndrome
Joshua has endured 51 surgeries, life-threatening skin infections, overheating challenges and ever weeping eyes. His mom looks back on his childhood and journals about the medical issues Joshua faced and how they treated them. Read how this teenager is embracing life as an adventure and educating others about having AEC syndrome.
Finding Success in the Water, in Law and in Love
Lawrence Dillon read John Baker’s ectodermal dysplasia story and discovered they had similar journeys. The champion swimmer and attorney talks about how he, too, has successfully navigated a lifetime of “being different” by facing it head on.
Choose Positivity and Live the Life You Want
When John was born in the 1950s with HED, he spent most of his toddler years indoors, on doctor’s advice. Then his family’s minister said something to his parents that changed his life forever. The retired U.S. Navy Federal Service employee looks back on growing up with HED and the philosophy that spurred his success. He also shares his best tips for dealing with the heat when you can’t sweat.