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,…
Keeping My Cool in Heated Situations
It’s field day! Out in the fresh grass while the sun blazes down from a perfect blue sky, I feel dizzy with excitement. Our team is doing well in the relay races and I’m having fun being outside the classroom. Suddenly, my teacher pulls me aside. “You’re bright red!” She looks panicked. “Come with me,…
Conference – Where You Can Always Come Home to Your NFED Family
This year’s Family Conference is a Homecoming, meaning a place where you can come home to your NFED family. You will find people who will welcome you with open arms. You can rekindle friendships made long ago. You’ll remember the fun had at previous Conferences and make new memories. Home is the soft place you…
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,…
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…
Hypohydrosis: How To Stay Cool When You Can’t Sweat
If you can’t sweat, how do you stay cool? Should you move to a cooler climate? Should you buy a cool vest? What cooling technique works best? We answer these questions and more in this document all about being cool.