by Heather McKelvie The liaisons are taking over the blog! We’re planning to use the blog to raise awareness of ectodermal dysplasias and to share our stories and experiences in a place where you can easily search and find topics that are important to you. We intend to promote NFED events (especially the Family Conference),…
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…
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…
Missing Orlando This Year
Hello from the Wilson family! We are excited to hear the 2012 NFED Conference is in the great place of Orlando, FL. You will have so much fun at the conference and experiencing the area. We have made great and lasting friendships at NFED events. I urge all that can attend to do so. We had…
Managing Temperatures at Disney and Meeting Magical Friends
by Melva Jeter With the summer, comes the NFED annual Family Conference, this year in Orlando, Florida. Now, being from Colorado, I thought it was incredibly cool in 2010 when the conference was in Colorado Springs, but Orlando? And so close to Disney World, Universal Studios and Sea World? This is a kid’s dream-come-true year!…