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…

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.

Career Reflections – Terri Andrews

An interview with Terri Andrews, who is affected by ectrodactyly-ectodermal dysplasia-cleft lip/palate (EEC) syndrome and who had a 20-year career as a registered nurse. When you were growing up did you know you wanted to be a nurse? I always knew I wanted to be in the medical field but I wasn’t sure exactly what role…

It Was Time That I Stop Ignoring the Thing That Made Me Most Unique

By Heather McKelvie In 1996, my mother and I went the Family Conference, which was in St. Louis that year.  Looking back, I don’t remember very much about it.  Perhaps because I was a teenager, I was in denial about the fact that my EEC was a life-long condition that I would always have to deal with. …