Learn More on Live Chat – Thursday, May 29 on Our Facebook Page – 6:30 – 7:30 p.m. Central Time Dear NFED Families, Edimer Pharmaceuticals has teamed up with Informed DNA to provide free genetic counseling services to families who have or suspect to have hypohidrotic ectodermal dysplasia (HED) or x-linked hypohidrotic ectodermal dysplasia (XLHED). Informed DNA…
An Open Letter to Mr. Shaquille Neal
April 28, 2014 Dear Mr. O’Neal, All of us at the National Foundation for Ectodermal Dysplasias (NFED) are terribly disappointed by the hurtful image that you and others recently posted on social media about a member of our family, Jahmel Binion, who is affected by ectodermal dysplasia. Individuals affected by these rare, genetic conditions often…
94 Years and Going Strong
I just called a friend to wish him a happy birthday. With a chuckle, he greeted me with the question, “How did you know I was still alive?!” I told him that with a spirit as big as his, I just knew he was alive and doing well. And he is. That’s our Joe Barone….
Welcome to the NFED Family Liaison Blog!
by Heather McKelvie The liaisons are taking over the blog! We’re planning to use the blog to raise awareness of ectodermal dysplasias and to share our stories and experiences in a place where you can easily search and find topics that are important to you. We intend to promote NFED events (especially the Family Conference),…
Nothing Can Replace the Human Connections and Interactions
By Kristin Matus-Kelso I first attended the NFED National Family Conference in 2006 when my youngest daughter, Ally, who is affected with EEC syndrome was just 1 1/2 years old. I remember questioning myself that year as to whether I should attend, was this really “necessary” since she was so young and wouldn’t remember it…
We Were NOT Treated as Just a Number…We Were Treated as Valued Individuals.
By DeAnn Huxman As I anticipate the 2012 National Foundation for Ectodermal Dysplasias National Family Conference in Florida, I’m filled with excitement for the time together with this group, our other Family. My family attended our first national conference in Kansas City in 2005. We had been interested in attending previous years, but were concerned…
Family Conference is sort of like a Wedding.
By Jack Kriz Hello out there! The 2012 NFED Family Conference is on its way this July in Orlando Florida, Yes!! as in Walt Disney World! I am Sooooo EXCITED!!! Seeing Minnie, Mickie, and Goofy (my fav) will be cool, so my 8 year old self says, but really, I am most excited to once…
Conference Means Knowing My Son is Not Alone
by Jennifer Hagerty With the National Family Conference fast approaching, I find myself reflecting and thinking about how much fun it would be to attend. Joshua is almost four years old and already knows that he has ectodermal dysplasia/AEC syndrome. He does not quite understand it but he knows it makes strangers gawk, point, whisper,…