By Susan, Paul and Zach Hamm Each year at this time anticipation starts to build about our summer trip to the National Family Conference. The Hamms can’t wait to be in Orlando and at the Buena Vista Palace! We’ve filled out our registration forms and made our hotel reservations already and now we’re trying to…
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…
A Doc’s Perspective on the NFED Family Reunion (aka Family Conference)
By Alanna F. Bree, M.D., NFED Scientific Advisory Council Attending the NFED Family Conferences are almost like a family reunion for me. Even though I am not related to anyone who attends, the people I have met through the NFED have become like an extended family to me. This includes babies, children & adults affected by…
We Gained Empowerment, Education and Emotional Support
By Craig and Julie Claeys Our son is affected by HED and is now 17 yrs. old. We have been attending Family Conferences since 1996 and have not missed but a few. Since our first conference in 1996, we found attending was so beneficial for our son and us as parents to be able to…
Register Early For A Chance to Win Disney Tickets
If you are planning to come to our National Family Conference in Orlando, be sure to register by May 25th. Early birds will have their name entered into a drawing for three cool prizes! 1st prize – Four evening tickets to Walt Disney World on Saturday, July 21st 2nd prize – Two nights’ lodging at the Buena Vista…
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.
Orlando is a Great Family Destination
Orlando is a great family destination so plan your vacation to coincide with the NFED Family Conference. Many of you may be concerned about the heat and the humidty in Florida but all conference activities at the Buena Vista Palace and Spa are held indoors in climate controlled rooms. The only outdoor activity is an…
Medicare and other benefits: Who pays 1st?
Medicare and other benefits: Who pays first? Managing multiple systems of benefits is complex. This information and guide will help you. https://ow.ly/ajg2y