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,…
What do your Family Conference fees actually pay for?
Basically, all your fees pay for is your food. We solicit sponsors, grants and use general donations to fund room rentals, speakers’ (12-15 unbelievable docs and dentists donate their time each year) and staff travel, scholarship recipients, off site activities, AV rental and childcare costs.The NFED absorbs 75% of the cost of the event. The 2012…
Four Research Opportunities at the National Family Conference
Families attending the 2012 National Family Conference in Orlando, July 18-21, have the opportunity to volunteer for the four projects listed below. To participate, sign-up on the 2012 national family conference registration form. You will receive your assigned research times when you check-in at registration on Wednesday, July 18th at the conference. Questions? Email Mary…
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…
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…