Amazing! Wonderful! Informative! Fantastic! Life-Changing! Educational Empowering! Fun! Fascinating! What word best describes our week in Washington D.C.? They all do! For me, it is hard to really describe the impact that week made on our entire community.
How I Replaced the Lonely Feeling With Hope
Briana Pinon felt incredibly alone when her baby was diagnosed with ectodermal dysplasia. That all changed when she connected with the National Foundation for Ectodermal Dysplasias. This mom talks about finding resources, connecting with other families and teaching her son about his condition.
Genetic Carriers: How to Tell Your Partner
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…