Something Exciting is Happening at NFED.org

Receiving more than 6,000 visitors every month, we know that NFED.org is a critical, go-to resource for NFED families, professionals, researchers, and individuals affected by ectodermal dysplasias around the world. It is often the first place that new families enter the NFED, desperately looking for information and help. We consider it the NFED front door. …

Keegan’s Denture Adventure – Part I

By Lindsey James My first year of motherhood was filled with many exciting “firsts”- Keegan’s first smile, the first time he rolled over, first foods, first words, first steps and so on. I embraced every milestone with great enthusiasm and anxiously awaited the next. Despite numerous health and feeding issues due to aspiration (choking on…

Ectodermal Dysplasias and Relationships

A few weeks ago, I offered to write a post about dating. At the time, I had just written the post about ectodermal dysplasias in the workplace and I was thinking that dating would be another good topic to explore. The truth is, it’s actually kind of hard to determine how much ectodermal dysplasias is to blame…

Richter Receives NFED’s Highest Research Award

Our founder, Mary K. Richter, received a standing ovation as she was named the Kenneth S. Brown, M.D. Research Award recipient for her monumental impact on ectodermal dysplasias research.  Timothy Fete, M.D., M.P.H., from the Scientific Advisory Council (SAC), presented the award to Mary Kaye at the Saturday celebration dinner at the Family Conference in…

A Gratifying Homecoming

Wow! What a great Family Conference!  If you attended, what was your favorite part?  Mine was spending time with all of you, the families.  It was gratifying to see all of the families and kiddos hanging out, having fun and sharing tips and stories.  The conference was full of good times, with lots of laughter,…