By Jason D’Angelo I love the Family Conference. It’s my second family and after as many times I have been, I still get so much out of it. I was fortunate enough to bring my girlfriend, Tiff (pictured above), last year which was a huge step in my life. She looks forward to going again…
A Mind-Body Duelist
Twenty-six-year-old Christopher Barbey recently wrote about his experience with hypohidrotic ectodermal dysplasia in an article published by the Journal of American Medical Association. Titled Mind-Body Duelist, Chris explores how emotionally difficult it was for him as a teen. He was confronted with the need for dental implants instead of traditional dentures to replace his missing…
Inability to sweat doesn’t keep area man from farming or playing with kids
Charlie Richter was a poster child for the National Foundation for Ectodermal Dysplasia in the 1980s, with his pale skin, bald head, flat nose and kid-size dentures. What the images didn’t show was the most serious symptom of his genetic disorder: The inability to sweat.
Fundraising? You Can Do this!
By Matt Nehrkorn Hi all! We are the Nehrkorn family from Wilsonville, Ore. We thought we were living an average everyday life until my youngest son, Oliver, turned 18 months of age. My wife, being a dental hygienist, found it odd that he had yet to pop his first tooth. We put him in her exam…
Evan’s Story
By Karen Forman My favorite quote of late has been Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain. Thirty-three years ago, I was not that wise. Now I dance. Evan is a smart, engaging and talented adult with a unique beginning into this world. So, Evan…
How This Teen Takes On Life With Ectodermal Dysplasia
By Kayte Speegle Hi. My name is Kayte. I am one of six in my family affected by hypohidrotic ectodermal dysplasia. I would love to say that it is “nothing,” but it is definitely a lot of something. My grandpa was the first of the family to be diagnosed with ectodermal dysplasia. Then, there was…
A Leap of Faith to Open Ourselves
By Nancy Nelsen, Guest Blogger We attended the National Foundation for Ectodermal Dysplasias (NFED) Family Conference during the summer of 2015 in Colorado Springs. Neither of us, my husband, Karl and I, were prepared for the emotions that filled us as we listened to other families’ stories, and told our own. We felt supported, connected…
A Friend Diagnosed My Grandson
By Nancy Jane Johnson I’d like you to meet Ethan Noble. He lives in Ellensburg, a small college town in the middle of Wash. which has quite distinctive seasons, snow in winter, 100+ degrees for a short time in summer and lots of wind! Ethan was born in York, Maine and is almost 15. He…