Helping others understand what it’s like to live with ectodermal dysplasias is one of our goals for Ectodermal Dysplasias Awareness Month. Here are 13 things some families affected by the rare condition wish you knew. I wish people knew that they all are braver than you think, stronger than they seem, and smarter than you think!…
From Shy to Smiling Spokesperson for Ectodermal Dysplasias
By Dawn Richardson I rarely had to trim Savannah’s toenails after she was born, and her fingernails were thin and brittle. I had very little experience with infants, so I did not realize this is not typical of children. Her baby teeth erupted mostly on schedule. Aside from being small and missing a set of…
‘Tis the Season – For Respiratory Illnesses
By Clayton Butcher, M.D. As an internal medicine and pediatric physician, I personally over the last two to four weeks have seen a significant increase in respiratory illnesses. They range from from viral upper respiratory infections, pneumonia, and good old fashion influenza. This season seems to be particularly severe. Many of our viruses including respiratory…
I AM
Catherine Hicks sent us a poem her son, Sam, had written when he was in the 8th grade. It’s amazing the difference a few years can make. “He is now a thriving college freshman. Mac from New York helped me, as a mother, let Sam leave the nest.” By Sam Hicks I am different. I…
I Love the Family Conference
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.