Growing up affected by hypohidrotic ectodermal dysplasia, Everett Hamilton never dreamed he would marry or have kids. Then, Sarah asked him on a first date and all of that changed.
Launching a Major Research Campaign
We stand at an unprecedented time in history. Preliminary findings from research show great promise for eradicating two symptoms of the most common k ind of ectodermal dysplasia. It’s extraordinary! But without funding, this research study and others will not continue. We are launching the “Impact Cures, Now” campaign to raise $300,000 in the next three years for ectodermal dysplasias research.
Cody’s Limitless Life
What have you let set you back today? This is a question that Cody Snell can answer with a smile. He has he never let anything including his x-linked hypohidrotic ectodermal dysplasia (XLHED) keep him from anything. That includes playing sports year round while growing up and working 10-hour days in 120 degree heat as…
Doing Everything I Can for Ectodermal Dysplasias
By Debbie Fenoglio I was pregnant with my second son, Benjamin, in the late summer of 2011 when it was first suggested that my oldest son, Jackson, had ectodermal dysplasia. Like many before me, I had not heard of ectodermal dysplasia. It was offered by our dentist as Jackson’s teeth were not erupting and he…
A Summer of Ectodermal Dysplasias Research
It’s definitely a busy summer for the National Foundation for Ectodermal Dysplasias (NFED)! If you follow our communications, you know we are going to be in Washington D.C. in July for the Family Conference and a historic first, Ectodermal Dysplasias Advocacy Day on Capitol Hill. Those are both incredibly important and major events for us….
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…
Babies With XLHED Treated In Utero
What’s going on with the research for x-linked hypohidrotic ectodermal dysplasia (XLHED) and EDI200? Last January, I announced that Edimer Pharmaceutical’s Newborn XLHED Clinical Trial did not achieve the outcomes which we had hoped for. In that trial, they dosed newborns who were affected by x-linked hypohidrotic ectodermal dysplasia (XLHED) with a protein called ED1200…
It’s All In the Genes
The pattern of inheritance for an ectodermal dysplasia is crucial to understand whether or not there is a risk for relatives of an affected individual to be affected.