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…
Teen Fieldtrip on Friday 22 July, 2011
Our Teens are going to have an awesome fieldtrip to The Edge, the world’s largest laser tag arena on Friday 22 July, 2011. A 14,000 sq. ft. multi level arena with trees, castles, wizzards, vines and creatures. The NFED will provide 2 games of laser tag and pizza for the teens (age 12-18). The bus…
Special Request for Saturday 23 July, 2011
Get out your vintage NFED duds! On Saturday 23 July, 2011 at the National Family Conference, we want you to wear any shirt you have with NFED on it. Do you still have your “We Can’t Smile Without You” Shirt from the 1980s? Or, how about an old Family Conference shirt? Whatever you have, wear…
Important: HED participants: Informed Consent Document & Medical Questionnaire
Attention HED Families participating in Research! There will be a meeting to inform participants about this research and answer any questions you may have on Thursday 21 July, 2011 from 5:30PM-6:30PM in Ballroom West! Please read the following carefully before you come to the National Family Conference if you are participating in the Edimer Pharmaceuticals,…
Why attend a National Family Conference II by Rachel Dahler
Hello NFED Family! My name is Rachel Dahler, from Cleveland, Ohio, and I am a 22 year old with HED. The NFED has been a huge part of my life since I was 6. That is when I attended my very first conference in Grand Rapids, Michigan. Since then, I have been to close to…
Childcare @ National Family Conference 2011: Important: Consent & Release Form
Corporate Kids Events Shortly, you will receive in the mail your National Family Conference Confirmation letter with additional information sheets to be filled out and e-mailed to Malinda@nfed.org or faxed to our office 618-566-4718 or bring the form filled out with you to the Conference! Below is one of these forms that need to be…
30th Anniversary Gala Wednesday 20 July 2011: Important Update: Transportation & Child care
You will receive your Family Conference Confirmation package shortly in the mail with additional information. One of them being the following: 30th Anniversary Gala Transportation & Childcare Update: Wednesday, July 20, 2011 Transportation The NFED will provide free transportation via coach bus from the National Family Conference site (the Hilton Garden Inn in O’Fallon, IL)…