By Josh Long Why do we donate our time and money to the NFED? Because the NFED is family! Two years ago, we attended our first Family Conference in Orlando, Fla. through a very generous NFED scholarship. The conference was a life-changing event for our entire family. We had mom, dad, son, daughter, grandma and grandpa in attendance. …
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,…
Managing Temperatures at Disney and Meeting Magical Friends
by Melva Jeter With the summer, comes the NFED annual Family Conference, this year in Orlando, Florida. Now, being from Colorado, I thought it was incredibly cool in 2010 when the conference was in Colorado Springs, but Orlando? And so close to Disney World, Universal Studios and Sea World? This is a kid’s dream-come-true year!…
Where to Shop, Eat, and Golf While You are at the NFED Fam Con 2012
Downtown Disney Nestled across the street from the luxurious resort of Buena Vista Palace Hotel & Spa where the NFED National Family Conference is being held, Downtown Disney® Marketplace waits to entertain and inspire. Offering a large array of shops and eclectic stores, the shopping area also features exhilarating nighttime fun and a wide selection…
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!