Understand the importance of age appropriate, medically necessary ectodermal dysplasia treatment.
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…
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 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…
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…
All I Want for Christmas is My Two Front Teeth
At Christmastime, I am reminded of many happy childhood traditions and memories. Some of my favorite memories involve snuggling up to watch Miracle on 34th Street, or leaping around the family room in a tutu along with The Nutcracker. (I will gleefully reenact this now, except without the tutu.) When I was growing up, we had…
Are you a Repeat Offender?
Charley Richter has attended 27 NFED National Family Conferences and Anil and Sean Vora have both attended 25. How close are you to reaching them? We will recognize our “repeat offenders” during Wednesday’s opening session. If you have attended at least five conferences, be prepared to be recognized!
Meet the People Who Helped Plan the 2012 Fam Con
2012 Family Conference Committee July 18-21, 2012 Orlando, Florida Our Family Conference Committee offered lots of great ideas for this year’s National Family Conference in Orlando. Because of their input, we have added a track for young adults and a “buddy” program where we will pair up veteran families with new families at the conference….