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…
I'm on My Way!
Good evening! I am in Hayes, Kansas and headed for Denver and then to Colorado Springs. I am on my way! We have Tim’s Expedition packed to the max and of course, full of my treats for the drive. We left last night after Tim got home, a little later than we hoped. The wind…
Four Days of Normalcy
By Rachel Dahler Every summer during the third week of July, the NFED hosts a National Family Conference. This has always been my favorite time of year. I went to my first Conference in 1995 when I was six and have been to 15 since. I can remember when I was younger, printing out countdown…
I Want to Keep My HED
By Lindsey James I became a mother on April 22, 2008. I had spent nine months preparing myself for the most important responsibility I would ever have. I was a sponge, absorbing all the information about pregnancy and motherhood I possibly could. My pregnancy was pretty uneventful and my labor experience was a dream. Everything…
Conference Means Knowing My Son is Not Alone
by Jennifer Hagerty With the National Family Conference fast approaching, I find myself reflecting and thinking about how much fun it would be to attend. Joshua is almost four years old and already knows that he has ectodermal dysplasia/AEC syndrome. He does not quite understand it but he knows it makes strangers gawk, point, whisper,…