In 2004, the U.S. Surgeon General declared Thanksgiving Family Health History Day. Family history is important for everyone: it is one of the strongest factors influencing risk for heart disease, stroke, diabetes, and cancer. Understanding the risks can enable you to take specific steps to reduce your chances of developing these conditions. For families with rare…
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…
Four Days of Normalcy
By Rachel Dahler Every summer during the third week of July, the NFED hosts a National Family Conference. This has always been my favorite time of year. I went to my first Conference in 1995 when I was six and have been to 15 since. I can remember when I was younger, printing out countdown…
I Want to Keep My HED
By Lindsey James I became a mother on April 22, 2008. I had spent nine months preparing myself for the most important responsibility I would ever have. I was a sponge, absorbing all the information about pregnancy and motherhood I possibly could. My pregnancy was pretty uneventful and my labor experience was a dream. Everything…
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…
Ectodermal Dysplasias in the Workplace
Choosing a Career Path with Ectodermal Dysplasias in Mind I’m not very old, but already I’ve experienced a variety of career fields. From an early age I loved to draw, build, create, imagine. I didn’t consciously think about what I wanted to be when I grew up. In fact, that was one of those questions…