By John A. Stith, M.D. , Professor, Pediatric Otolaryngology Saint Louis University School of Medicine, NFED Board of Directors and Patient Care Council I have been privileged to serve the NFED as a member of the board of directors for several years. It seems like yesterday when Dr. Tim Reichert invited me to consider becoming…
Two Questions… How will you answer?
By Mario Adamo from Zurich, Switzerland Family Conference Volunteer in Columbus, Ohio Do you remember the movie “The Bucket List”? There were those two individuals, both condemned by cancer, sitting above a pyramid, talking about ancient beliefs. For every soul knocking on paradise’s door, the Gods held two questions: “Did you find joy in your…
Happy Holidays!
It is hard to believe we are just a few weeks away from starting a new year. Whew! The time certainly flies. When I look over 2015, I think of all of the wonderful things that occurred in this year and I am thankful for all of our blessings. You helped us accomplish all of…
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…
Fam Con 2012: Fly or drive?
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…
How do we pick our National Family Conference Site?
Location, Location, Location! Have you ever wondered how we pick all the fun and exotic places that the NFED holds the National Family Conference? Do we throw a dart at a map and select our fate? The process is a little more scientific than that. To keep things fair for all parts of the country,…
Could not come to our National Family Conference? Tell Us Why!
Our 2011 National Family Conference is sadly enough over with. Almost 400 individuals were in O’Fallon, Illinois to learn about the ectodermal dysplasias and met others who are similarly affected. We are thrilled that so many families were able to join us. If you were not able to attend this year’s Family Conference, we want…
NBC St. Louis TV Interview @ NFED National Family Conference
Please, check out the TV interview by KSDK St. Louis during our NFED National Family Conference in O’Fallon, IL Great exposure for the NFED. https://www.ksdk.com/news/article/268092/3/Despite-hot-days-rare-genetic-disorder-keeps-people-from-sweating