94 Years and Going Strong

I just called a friend to wish him a happy birthday. With a chuckle, he greeted me with the question, “How did you know I was still alive?!” I told him that with a spirit as big as his, I just knew he was alive and doing well. And he is. That’s our Joe Barone….

Nothing Can Replace the Human Connections and Interactions

By Kristin Matus-Kelso I first attended the NFED National Family Conference in 2006 when my youngest daughter, Ally, who is affected with EEC syndrome was just 1 1/2 years old.  I remember questioning myself that year as to whether I should attend, was this really “necessary” since she was so young and wouldn’t remember it…

We Were NOT Treated as Just a Number…We Were Treated as Valued Individuals.

By DeAnn Huxman As I anticipate the 2012 National Foundation for Ectodermal Dysplasias National Family Conference in Florida, I’m filled with excitement for the time together with this group, our other Family.  My family attended our first national conference in Kansas City in 2005.  We had been interested in attending previous years, but were concerned…

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,…

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. …