What have you let set you back today? This is a question that Cody Snell can answer with a smile. He has he never let anything including his x-linked hypohidrotic ectodermal dysplasia (XLHED) keep him from anything. That includes playing sports year round while growing up and working 10-hour days in 120 degree heat as…
Doing Everything I Can for Ectodermal Dysplasias
By Debbie Fenoglio I was pregnant with my second son, Benjamin, in the late summer of 2011 when it was first suggested that my oldest son, Jackson, had ectodermal dysplasia. Like many before me, I had not heard of ectodermal dysplasia. It was offered by our dentist as Jackson’s teeth were not erupting and he…
A Legacy of HED: Finding Answers for the Reeder Family
Ectodermal dysplasia runs in Kylie Reeder’s family. After she married, her in-laws learned that the daughter they are adopting may also share the condition.
The Power of Sharing Our Journey with EEC Syndrome
An NFED dad and self-described introvert finds the strength in being vulnerable and the power that comes from sharing your story. He and his family share how they are facing his son’s challenges with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome and using it as an opportunity to raise awareness and funds.
A Parent’s Persistence Pays Off
Armenian eleven-year-old artist, Nika, has already had 4 sets of dentures thanks to her parent’s persistence and her dentist’s participation and willingness to go on the dental journey.
No Longer Feel Isolated With AEC Syndrome
Learn about the Brown family’s journey when their daughter, Erin, was diagnosed with Ankyloblepharon-Ectodermal Defects-Clefting (AEC) syndrome. They also talk about how their NFED family has been a tremendous help over the last 5 years.
The Missing Piece of the Puzzle
After nearly two years of unexplained fevers, chronic respiratory illness and feeding issues, Mom, Lindsay James, was tired. Thankfully, her google search led her to the NFED which became a beacon and filled their lives with light.
Make time to visit with your NFED family
By Meredith Grimes Our first National Foundation for Ectodermal Dysplasias (NFED) Family Conference was a life-changing week. We were new to the diagnosis and feeling completely overwhelmed. We had a list of questions a mile long. What is hypohidrotic ectodermal dysplasia (HED), what does it mean to be a carrier, what do we need to…