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…
BE HEARD. INSPIRE OTHERS. BE YOURSELF.
Wow! Can you believe it is February already? We all know what happens in February – Valentine’s Day, Ground Hog Day, the Super Bowl. But more importantly, it is Ectodermal Dysplasias Awareness Month, #EDAM2016. This month, we are striving to raise the positive awareness of this condition which affects an estimated 2 in 10,000 births….
Smiling About Snot and Spit
Liam is a happy little guy whose smile lights up the room – and your heart. Like most 11-month-olds, he drools constantly and often has a runny nose. Unlike most kiddos his age, that saliva and mucous is a welcome surprise for his parents.
Breast Implants
Editor’s note: Lack of breast development is common in certain syndromes of ectodermal dysplasia. We wanted to share a few stories of affected women who experienced lack of breast growth either in one or both breasts. Two of the women interviewed chose to get breast implants, while the other did not. Names and identifying details have…
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…