My name is Aaron Aselage. My father, brother, and of course, myself, all have ectodermal dysplasia. To say we had it rough as children is an understatement. Each of us had similar issues, but we’re also unique. For instance, my brother had a more intensive surgery than myself in terms of cleft palate and dental work,…
Ectodermal Dysplasias: How Nails Can Be Affected
The nails in some types of ectodermal dysplasia may be… poorly developed, small, thick or thin, brittle, discolored, cracked, abnormally curved, or ridged. In addition, they may grow slowly or shed periodically and may develop light spots, lines, or patches. The nails and surrounding cuticle area may become infected by fungus, yeast, or bacteria. If…
15 Reasons to Attend Family Conference
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…
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…
My Life’s Calling!
By Sarah Tevis Poteet, D.D.S., P.A. NFED Board of Director member since 2003 & Patient Care Council member I grew up as part of the NFED family as an affected individual that was missing some teeth. I was a part of an implant clinical trial at the National Institutes of Dental and Craniofacial Research as…
Our 2016 Send a Kid to Camp Campaign is Live!
As many of you know, the NFED kids have a great time at Kays’ Kids Camp during conference! They create meaningful friendships, play, have fun, and get to enjoy moments with others without having to feel different from their peers. As many of you also know, it may be a difficult time financially to send…