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…
Family Conference is sort of like a Wedding.
By Jack Kriz Hello out there! The 2012 NFED Family Conference is on its way this July in Orlando Florida, Yes!! as in Walt Disney World! I am Sooooo EXCITED!!! Seeing Minnie, Mickie, and Goofy (my fav) will be cool, so my 8 year old self says, but really, I am most excited to once…
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,…
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…