All of us at some time or another have wished for a genie. Rub the magic lamp and get three wishes. How easy would that be! Sadly enough, this doesn’t happen. Why is that? Could it be because we no longer believe in magic? What if we could borrow the magic lamp for even just…
Four Days of Normalcy
By Rachel Dahler Every summer during the third week of July, the NFED hosts a National Family Conference. This has always been my favorite time of year. I went to my first Conference in 1995 when I was six and have been to 15 since. I can remember when I was younger, printing out countdown…
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,…
Getting Ready for Family Conference
Good evening, Whew! Crazy, busy day in the office today. We are on the home stretch, moving full force ahead, getting the final details together for Family Conference next week! Can you imagine five women in the office along with two interns making sure all the I’s are dotted and t’s crossed? I bet you…
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…
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,…