Jack Kriz was our guest blogger on WebMD. Read Jack’s story in growing up with EEC syndrome and his motto of “Use What You Got.” His blog is the first of several we will be posting in the upcoming year in the Chronic Conditions blogs on WebMD as well as on Gateway to the NFED blog.
2011 Halloween Bash Update!
A while back, we posted the “Save the Date” information for the 11th Annual Halloween Bash, an evening to benefit the National Foundation for Ectodermal Dysplasias in New York City, NY on Thursday October 27th, 2011. Please, check out the complete invitation! Tell your friends about this great fundraising event! How about placing an ad in…
Irving, Texas Man Can’t Sweat, But It’s Cool By Him!
Lee Goggin was featured in an article in the September 5th Dallas Morning News issue. Texas had a brutally hot summer this year. Read how Lee survived the heat. What an inspiring story!
Walk for Ectodermal Dysplasias 8 October 2011
Our good friends of Delta Theta Tau Sority, Inc are hosting a walk to benefit the NFED on October 8th, 2011 in Bethel, MO at 7AM. Registration and waiver due before September 30, 2011. $15 Entry fee includes t-shirt.
George Keeble beats Medical Condition! UK Story!
Meet George, an actor who just earned a place at National Youth Theatre in London. Great story from the UK, “When I am performing my condition doesn’t hold me down. I can be anything I want to be and I want to show everyone that.” Read about it here!
Saturday July 23rd, 2011, NFED Kid’s Camp Schedule
Starting time: 7:30AM- 3:30PM Schedule: Ages 3-5 years: Our precious Munchkins Crazy Kid’s Carneval: Crazy Clowns, Classic Carneval Games, Lunch Break, Marvelous Magic Show & Photo Booth Fun! Ages 6-8 years: Cool Kids Tri-Wizard Tournament: Wonderful Wizard Cloaks, Perfect Potter Tattoos, Wonderful Wands, Wild Wizard Games, Lunch Break, Marvelous Magic Show & Game Time. Ages…
Buffet Lunch for Purchase on Thursday, 21 July 2011
As all of you are aware, lunch is not provided on the first official day of our NFED National Family Conference. The Hotel’s restaurant is normally not open on Thursdays, but the Sous Chef and his staff decided to offer a buffet menu on Thursday, 21 July 2011 in the Hilton Garden Inn Hotel Restaurant: The…
Meet the Kelso’s & Huxman’s! Who are they???
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…