Genetic carriers or people with ectodermal dysplasias will have to tell their partner at some point when things get serious. Here are some tips to help you.
PROSE Lenses Give Super E the Ability to See
“Ethan has overcome everything that has happened. He has remained positive. – Natalie Kranig Ethan Kranig did not earn the nickname “Super E” for nothing. At nine years old, Ethan continues to prove time and again that he is a fighter in facing the many challenges of his ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. Ethan’s positive attitude…
What better time to raise money for the NFED?
By Brian Brubaker Overheating hasn’t been something that Kindergartner Emily Rose Brubaker has had to deal with very much so far growing up in Alaska. Normally in Alaska, hyp-O-thermia is much more common that hyp-ER-thermia. But in the middle of the Alaska winter, when the Iditarod sled dog race is about to start, the…
The Next Four Family Conference Locations Are…
I am EXCITED to tell you where Family Conference is going to be held for the next four years! One of our goals is always to enable as many people as we can the opportunity to attend at least one of our Family Conferences – and hopefully, more! We do this by keeping registration fees…
Volunteer Spotlight: WOMEN4GIVEN
We are thrilled to have started a relationship with the Women4Given in O’Fallon/Fairview Heights, IL. These ladies were and will continue to be a tremendous supporter of the NFED.
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…
XLHED Treatment: From Setback to Renewed Hope
I am excited to share with you the latest news in our journey to develop a treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED). EspeRare, a not-for-profit drug developer based in Switzerland, is picking up where Edimer Pharmaceuticals left off! EspeRare is exploring the possibility of re-launching the development of ER-004 (formerly known as EDI200) as…
Ectodermal Dysplasia Conferences: Getting to Know Other Families Like Yours
The world can be a pretty lonely place if you think that yours is the only family navigating the twists and turns of life with ectodermal dysplasia. But there’s no need to live on an island! There are plenty of ways to start making connections and building a network of love and support, including attending ectodermal dysplasia conferences.