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.
Where Can You Turn When You Need Support? The NFED Of Course!
At 18 months old, Asher wasn’t showing signs of teeth development. Dental x-rays confirm that he has two upper teeth that have not ruptured, and those tooth buds are conical in shape. He has no other tooth buds present. This otherwise happy and healthy little blonde boy also has sparse hair, eczema flare ups, and he can’t produce sweat from his neck up. All classical signs of hypohidrotic ectodermal dysplasia (HED).
Fever and Ectodermal Dysplasias
By Tim Fete, M.D., M.P.H. and Clayton Butcher, M.D. Fever and ectodermal dysplasia can be tricky for parents. Your child is running a temperature and acting a little lethargic. Is he getting sick? Or, is he overheated because he doesn’t sweat correctly? Should you treat the fever? Should you call your doctor? All of these…