By Kristin Matus Kelso “Do all the good you can. By all the means you can. In all the ways you can. In all the places you can. At all the times you can. To all the people you can. As long as ever you can.” ― John Wesley I’m often asked why…
Sweat It Out: The Duke Family’s Journey
By Jamie Duke I learned about hypohydriotic ectodermal dysplasia over two years ago when my son, Nicholas, was diagnosed with XLHED. I knew he couldn’t sweat, but I didn’t truly know and understand until he asked me why my skin was wet after I came back from a run. That hit me hard. I looked…
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…
Fulfilled by Fundraising for Our NFED Family
By Rich and Aimee Klinger We packed our four children and luggage into our nine-passenger suburban on Sunday July 22, 2012 and headed south from our home in Halifax, PA. As we departed, we were skeptical about our adventure. We had traveled 1050 miles in approximately 18 hours to Orlando, Florida to attend our first NFED Family Conference. We…
A Lighthouse to Guide our Lifeboat
By Jenny Steele Three years ago, we heard the term ectodermal dysplasia for the first time. An internet search introduced us to the NFED. With a few clicks of the mouse, we found a wealth of information and a community of people who understood what we were facing. The NFED family would become a lighthouse…
EEC Chick at Work
By Heather McKelvie I volunteer for the NFED because I want to be part of something that is bigger than myself. When I was growing up, I secretly hoped that someone I knew would have a child with EEC, or at the very least, with a cleft lip and palate, or ectrodactyly. I imagined that…
Off the Radar!
By Marc Steingesser I volunteer for the NFED for two reasons: Those of us affected by ectodermal dysplasia are part of a rare group with unique life challenges that can sometimes place us outside the box and off the radar of the mainstream world. It can be difficult to find well-informed medical professionals able to…
Howdy!
By Susan Hamm I’ve always been the type of person to volunteer for projects or causes I was passionate about and the NFED was no different. I attended my first Family Conference and came home with an overwhelming amount of information on this syndrome that I had barely learned to pronounce. After processing what I…