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…
Volunteer Spotlight: Our Website Committee
Building an all-new NFED.org is a major undertaking! Luckily, we have five volunteers who are advising us at every step of the way. The research phase of the project began in June of 2015. We are excited about how the site is developing. The big reveal will be in November. For their hard work and…
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…
Welcome Home!
By Sue Kluzek I don’t know about you, but I am getting very excited about our NFED Family Conference this summer! It’s an exciting time for all of us. We (the NFED) are celebrating our 35th anniversary. We have new programming and a new format for some of the conference. It’s going to be great!…
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,…
Ectodermal Dysplasias: How Nails Can Be Affected
The nails in some types of ectodermal dysplasia may be… poorly developed, small, thick or thin, brittle, discolored, cracked, abnormally curved, or ridged. In addition, they may grow slowly or shed periodically and may develop light spots, lines, or patches. The nails and surrounding cuticle area may become infected by fungus, yeast, or bacteria. If…
Greetings from the NFED
Happy Spring! Or, at least we hope it arrives soon. What’s going on at the NFED? Needless to say, we are busy, busy, busy! I would like to share with you our progress towards our goals and other activities. Family Conference We are in full gear preparing for a great Family Conference in St. Louis,…