I could list way more than 15 reasons why you join meet us in St. Louis this July. But, this list will get you started. Tour St. Louis: Did you know St. Louis has cheese you can get nowhere else? Refresh and Recharge: Take a few days off from your busy schedule and relax and…
Greetings from the NFED
Happy Spring! Or, at least we hope it arrives soon. What’s going on at the NFED? Needless to say, we are busy, busy, busy! I would like to share with you our progress towards our goals and other activities. Family Conference We are in full gear preparing for a great Family Conference in St. Louis,…
Who Could Say "No" to Mary Kaye Richter?
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…
8 Things You Should Expect From Your Dental Care Team
The oral manifestations of the ectodermal dysplasias are often complex, and affected individuals might benefit from a team approach to evaluation and planning for treatment. Do not accept all team members as being equally trained and experienced. Ask questions… about the training of key individuals on the team; about the format for team meetings; about…
The Best He Can Be
By Gina Quintanar It’s been almost 16 years since my son Alex was diagnosed with ectodermal dysplasia. He was about four months old when I took him with me to a dentist appointment. The dental assistant was playing with him and asked if I had ever noticed that he had no body hair. I said that I…
What Does HED Look Like?
Hypohidrotic Ectodermal Dysplasia (HED)
Other Names: Anhidrotic ectodermal dysplasia, Christ-Siemens-Touraine syndrome
An Update from Carver
By Carver Claeys For as long as I can remember, I’ve had dentures. My mother made the sacrifices to give me the opportunity to feel like all of the other children who were smiling for one reason or another. Laughter on the playground with your friends. Smiling at your childhood sweetheart. My mother didn’t want…
A Tribute to our Scientific Advisory Council
Every once in a while it is important to sit back and reflect on how blessed we are to have such wonderful professional commitment to our organization and the families we serve. The Scientific Advisory Council (SAC) and Patient Care Council (PCC) are two examples of professional dedication to the NFED. The PCC focus is…