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.
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…
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 Legacy of HED: Finding Answers for the Reeder Family
Ectodermal dysplasia runs in Kylie Reeder’s family. After she married, her in-laws learned that the daughter they are adopting may also share the condition.
The Power of Sharing Our Journey with EEC Syndrome
An NFED dad and self-described introvert finds the strength in being vulnerable and the power that comes from sharing your story. He and his family share how they are facing his son’s challenges with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome and using it as an opportunity to raise awareness and funds.
A Parent’s Persistence Pays Off
Armenian eleven-year-old artist, Nika, has already had 4 sets of dentures thanks to her parent’s persistence and her dentist’s participation and willingness to go on the dental journey.