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…
How Could I Make a Difference?
By Gina Quintanar When my son was 10 years old, he attended his first NFED Family Conference. I will never forget walking in the door that first day. I felt like for the first time since he was born, I could take a deep breath. I felt like I had come home to a place where…
Volunteering for the NFED is My Opportunity to Give Back
By David Sanmiguel The NFED has been a very important part of my family’s life, since the day my daughters were diagnosed. The moment my family and I became members of this great organization we only received good things, along with a warm welcome, understanding, help, information and great times. Simply put, everything has been wonderful. Our…
"Ripley's Believe it or Not" Helped my Family Find the NFED
By Stanley Zwirn Our beautiful little girl was born in the month of May. As time wore on, we noticed that at 18 months of age, she did not have any teeth and had a terrible time with the heat. With recommendation from our older son’s pediatric dentist, we went to the UCONN Health Center…