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,…
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…
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!
The Value of a Family Conference
By Rachel Buerman The NFED Family Conference has been an invaluable experience for us. We attended our first conference in Colorado 2010. For the first time since Jordan was born we felt at home. We learned more from other families in 3 days than we had learned from our local doctors in 2 years. NFED…
The Talent Show is the Highlight for Me
I attended my first NFED National Family Conference in 2009 when it was held in Williamsburg, VA.. Immediately upon going through the doors, I felt a sense of welcoming and family even though I had never met anyone before. Until my daughter was born in 2007, I had never met or even spoke to anyone…
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…