We just wrapped another life-changing, heartwarming, spirit-lifting Family Conference in St. Louis! What an amazing conference from start to finish. The conference started off with Jack Kriz riding his bike in from Kansas City. He rode 288 miles of bike riding in the awful heat. What dedication to do this ride to raise money for the…
I Will Never Have a Perfect Smile!
by Alex Gaillard I have ectodermal dysplasia, and for me, that meant that I would never have a perfect smile. Since growing up, I’ve always known there was something off about my teeth. They didn’t grow in like my friends’. There were too many holes and not enough teeth growing in. My dentist noticed this in…
Why Not?
By Janet Johnson Family Liaison for Nevada & Utah and more! I have been known to some colleagues to be a pointer, not a painter. This short blog is an attempt to answer the question “Why I volunteer for the NFED?” I truly believe the answer to that question is, “Why not?” My name is…
Transforming Me
At 37, Cheryl Kingsford has been working for a lifetime to get the smile she radiantly beams every day now. Cheryl was eight years old when she was first diagnosed with ectodermal dysplasia but because of other issues going on in her family, the diagnosis was forgotten. It wouldn’t be till 22 years later that…
Ectodermal Dysplasia Didn’t Hold Back These 2016 Graduates
We congratulate the following individuals who graduated from high school this year. We knew you would enjoy reading about their accomplishments and the bright plans for their future. They don’t let ectodermal dysplasia hold them back from living their best life.
Our First Conference
By Randi Walker I can still remember walking in to our first NFED Family Conference in Colorado Springs, Colo. Weston, our only child at the time, was three years old. Those first three years were quite difficult. Weston had experienced several symptoms of x-linked hypohidrotic ectodermal dysplasia (XLHED), but his doctors had never heard of…
Similar, But Unique
My name is Aaron Aselage. My father, brother, and of course, myself, all have ectodermal dysplasia. To say we had it rough as children is an understatement. Each of us had similar issues, but we’re also unique. For instance, my brother had a more intensive surgery than myself in terms of cleft palate and dental work,…
We are Family! My Brothers, Sisters and Me!
By Chris and DeAnn Huxman In 2001, our second son, Tyler, was born with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. We had never heard of EEC, had no information about it, and had no idea what the future would hold. We didn’t know where to turn or where to find information. While searching the web for anything about EEC,…