You are who you are for a reason. You’re part of an intricate plan. Be happy that you are you. We certainly are! I remember as I was growing up thinking, “Gee, I wish I was more athletic, prettier or smarter.” Even now, I wish I was shorter so I could wear those sexy, stiletto…
Top 10* Most Common Ectodermal Dysplasias
* The numbers are taken from the National Foundation for Ectodermal Dysplasias (NFED) database and are not based on medical literature. There are more than 180 distinct types of ectodermal dysplasias cited in the literature. 1. Ectodermal Dysplasia, Specific Type is Unknown by the NFED – 3,168 People Almost half of the people on the NFED…
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,…
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….