A few weeks ago, I offered to write a post about dating. At the time, I had just written the post about ectodermal dysplasias in the workplace and I was thinking that dating would be another good topic to explore. The truth is, it’s actually kind of hard to determine how much ectodermal dysplasias is to blame…
Ectodermal Dysplasias in the Workplace
Choosing a Career Path with Ectodermal Dysplasias in Mind I’m not very old, but already I’ve experienced a variety of career fields. From an early age I loved to draw, build, create, imagine. I didn’t consciously think about what I wanted to be when I grew up. In fact, that was one of those questions…
A Gratifying Homecoming
Wow! What a great Family Conference! If you attended, what was your favorite part? Mine was spending time with all of you, the families. It was gratifying to see all of the families and kiddos hanging out, having fun and sharing tips and stories. The conference was full of good times, with lots of laughter,…
Homecoming
If you’ve ever been away from home and your loved ones for a while, you know how good it feels to return. Whether it’s been a month or a year, the sense of familiarity remains and it feels like no time has passed at all. Attending the annual NFED Family Conference is like that. Even if it’s…
94 Years and Going Strong
I just called a friend to wish him a happy birthday. With a chuckle, he greeted me with the question, “How did you know I was still alive?!” I told him that with a spirit as big as his, I just knew he was alive and doing well. And he is. That’s our Joe Barone….
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…