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…
Awareness Month Fundraising
We are excited to kick off Ectodermal Dysplasias Awareness Month with your chance to share your customized Facebook Fundraising Page with all of your online friends and family. This is an easy and fun way for you to spread the word, but also to give others the chance to help change lives of those affected…
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.
Ectodermal Dysplasias Awareness Month 2017
An estimated 3.5 of 10,000 people are affected by ectodermal dysplasias. Very few people have heard about these conditions or know about the challenges people with it face. You can help us change that number. Join the National Foundation for Ectodermal Dysplasias (NFED) in our worldwide effort this February to raise awareness and funds for these…
Advocacy
By Beth Orchard I was told from an early age, I had the disorder, yet I was not diagnosed until my early thirties with x-linked hypohidrotic ectodermal dysplasia (XLHED). Being a young child with differences in my teeth, hair and skin (including lack of sweat glands) made me overly self-conscious. I was picked on and…
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…