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.
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….
By Maranke I. Koster, Ph.D. and Peter J. Koch, Ph.D., University of Colorado School of Medicine Since our last research update, we have been hard at work to understand the basis for skin and eye abnormalities that occur in patients affected by ankyloblepharon-ectodermal defects-clefting (AEC) syndrome and ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. These two ectodermal dysplasias are caused…
By Bracee Dudley In my freshman year of high school, I was unfortunate enough to have scratched my right eye and create a corneal ulcer, which is an open sore in the outer layer of the cornea. Thanks to frequent visits to my local ophthalmologist, I obtained antibiotics and was soon able to see semi-comfortably again….