At Christmastime, I am reminded of many happy childhood traditions and memories. Some of my favorite memories involve snuggling up to watch Miracle on 34th Street, or leaping around the family room in a tutu along with The Nutcracker. (I will gleefully reenact this now, except without the tutu.) When I was growing up, we had…
I Have AEC, and I Can Run
After running the Hot Chocolate 5K in 2013, and thoroughly enjoying myself, I set a goal for myself to run at least three 5K’s and a 15K before the end of 2014. It had been years since I last ran competitively, but I’ve learned a thing or two about smashing limits in my lifetime. As…
Keegan’s Denture Adventure – Part 2
(This story is part two of a three-part story. Read part one.) By Lindsey James I have always enjoyed going to the dentist. As a child, my great-aunt worked as an assistant to my dentist. Visits to Dr. Gary meant seeing Aunt Linda… and getting to pick a prize from the beloved treasure chest. I…
Gratitude
Here in the United States, Thanksgiving is the time of year where we traditionally reflect on our lives and consider all that we are grateful for. Being able to appreciate what you have is a valuable skill. In a New York Times article, John Tierny states that the positive attitude that comes from cultivating an “attitude…
Celebrate Family Health History Day!
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…