Our hearts are heavy. The matriarch of our National Foundation for Ectodermal Dysplasias (NFED) family, Mary K. Richter recently died. We know this has come as a shock for our community. Amidst our profound sadness, join us as we remember this incredible woman.
Liliett Alarcon’s home in Cuba is filled with the joyful sounds of Caribbean music when her son is playing his drum set. But the Caribbean weather—very hot and very humid—can be tough at times for Manuel since he doesn’t sweat. Learn how Manuel is coping and how his mom. doctors and community support him.
Sandi Hirst is a grandma who is passionately advocating for the three generations in her family who are affected by x-linked hypohidrotic ectodermal dysplasia. She doesn’t want her daughters to have to pay six figures for her grandsons’ dental care. Read this month’s Volunteer Spotlight to find out what she’s doing to help advance the Ensuring Lasting Smiles Act and why.
We have great news for XLHED families in the United States. The first site in the U.S. has opened at Washington University in St. Louis for
EDELIFE, the prenatal study for XLHED-affected boys. Learn about the treatment they are studying and how it can potentially impact XLHED symptoms, including the ability to sweat.
Andrew James’ first year of life was traumatic, requiring many ER visits for unknown reasons.
When his parents finally had a reason for their baby boy’s health challenges, ectodermal dysplasia, they turned to the NFED for support.
The NFED is proud to have supported the James family and other families like them for 40 years!
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!
For the first time, women who have the gene variant for x-linked hypohidrotic ectodermal dysplasias (XLHED) have another option to consider when they are family planning. They can choose to participate in a clinical trial called EDELIFE where researchers are testing a potential therapy in-utero on male fetuses with the condition! Find out how the condition can be inherited and how you can learn if you are a carrier.