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,…
A Sense of Belonging
By Lindsey James Last year, my son, my sister and I attended our very first NFED Family Conference and what an incredible experience it was! I had many reasons for wanting to attend – I wanted to go and absorb as much information about HED as I possibly could. I also wanted my son…
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. …
The Value of a Family Conference
By Rachel Buerman The NFED Family Conference has been an invaluable experience for us. We attended our first conference in Colorado 2010. For the first time since Jordan was born we felt at home. We learned more from other families in 3 days than we had learned from our local doctors in 2 years. NFED…
The Talent Show is the Highlight for Me
I attended my first NFED National Family Conference in 2009 when it was held in Williamsburg, VA.. Immediately upon going through the doors, I felt a sense of welcoming and family even though I had never met anyone before. Until my daughter was born in 2007, I had never met or even spoke to anyone…
Meet the Kelsos & Huxmans!
The Kelso and Huxman families met in 2006 at the NFED Family Conference in St. Louis. Both have children affected by EEC syndrome and they found an instant connection with one another. Before that conference had ended, they were finishing each other’s sentences; their children were referring to themselves as “cousins”; and they were making…
A Doc’s Perspective on the NFED Family Reunion (aka Family Conference)
By Alanna F. Bree, M.D., NFED Scientific Advisory Council Attending the NFED Family Conferences are almost like a family reunion for me. Even though I am not related to anyone who attends, the people I have met through the NFED have become like an extended family to me. This includes babies, children & adults affected by…
We Gained Empowerment, Education and Emotional Support
By Craig and Julie Claeys Our son is affected by HED and is now 17 yrs. old. We have been attending Family Conferences since 1996 and have not missed but a few. Since our first conference in 1996, we found attending was so beneficial for our son and us as parents to be able to…