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,…
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!
Fam Con 2012: Fly or drive?
By Susan, Paul and Zach Hamm Each year at this time anticipation starts to build about our summer trip to the National Family Conference. The Hamms can’t wait to be in Orlando and at the Buena Vista Palace! We’ve filled out our registration forms and made our hotel reservations already and now we’re trying to…
Meet the Kelsos & Huxmans!
The Kelso and Huxman families met in 2006 at the NFED Family Conference in St. Louis. Both have children affected by EEC syndrome and they found an instant connection with one another. Before that conference had ended, they were finishing each other’s sentences; their children were referring to themselves as “cousins”; and they were making…
A Doc’s Perspective on the NFED Family Reunion (aka Family Conference)
By Alanna F. Bree, M.D., NFED Scientific Advisory Council Attending the NFED Family Conferences are almost like a family reunion for me. Even though I am not related to anyone who attends, the people I have met through the NFED have become like an extended family to me. This includes babies, children & adults affected by…