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,…
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…
Are you a Repeat Offender?
Charley Richter has attended 27 NFED National Family Conferences and Anil and Sean Vora have both attended 25. How close are you to reaching them? We will recognize our “repeat offenders” during Wednesday’s opening session. If you have attended at least five conferences, be prepared to be recognized!
Meet the People Who Helped Plan the 2012 Fam Con
2012 Family Conference Committee July 18-21, 2012 Orlando, Florida Our Family Conference Committee offered lots of great ideas for this year’s National Family Conference in Orlando. Because of their input, we have added a track for young adults and a “buddy” program where we will pair up veteran families with new families at the conference….
Four Research Opportunities at the National Family Conference
Families attending the 2012 National Family Conference in Orlando, July 18-21, have the opportunity to volunteer for the four projects listed below. To participate, sign-up on the 2012 national family conference registration form. You will receive your assigned research times when you check-in at registration on Wednesday, July 18th at the conference. Questions? Email Mary…
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…