Roy and Leslie welcomed their fourth child and first son Maverick in 2009. From the beginning, he had signs that made him different than their other three children. He was sensitive to the sunlight where they lived in Texas and only wanted to go outside at night. When Maverick finally developed a few teeth and…
We Volunteer So Others Don’t Feel Lost
by James Kluzek We were asked why we volunteer for the NFED. It all started November 16, 2000 when our daughter, Christina, was born with a genetic disorder called Goltz syndrome. This day changed our lives forever. We had never heard of this syndrome and more importantly most of our doctors knew nothing about it either….
Success: The Best Kind of Revenge
by Patrick Brenner High school is rough. With pressure from your peers to fit in, with pressure from your parents to behave, with pressure from the school to study hard, it’s a miracle any of us made it out alive. Some of us had an exceptionally difficult experience. I consider myself one of those. Back…
We Are Flying High!
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 JackKriz 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 NFED. …
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.