We are excited for our 2015 graduates! Every one of you has accomplished great things in your lives and are sure to go on to be even greater. Congratulations Class of 2015! Enoch Carnahan Greenville, South Carolina Graduating from: Greer Middle College Charter High School Five things about me that I would like people to…
Finding Strength in Moments of Pain
By Acacia Hathaway When my daughter, Ella, is older I will tell her the heart touching story of her first birthday and why I chose butterflies as her theme. She will begin to understand that she was strong from the beginning. She has taught me what strength really is. When Ella was almost a year…
Be a Genie for the NFED
All of us at some time or another have wished for a genie. Rub the magic lamp and get three wishes. How easy would that be! Sadly enough, this doesn’t happen. Why is that? Could it be because we no longer believe in magic? What if we could borrow the magic lamp for even just…
Déjà Vu All Over Again
By Mary K. Richter NFED Founder and Executive Director 1981-2010 While we often hope for or look for change or something better, time suggests that much in life doesn’t really change all that much. Take for instance the mom who works hard to teach her children to put away their toys and possessions. Chances are…
10* More Rare Ectodermal Dysplasias
All of the 180+ different types of ectodermal dysplasias are considered “rare” because they affect less than 200,000 people in the United States. But some of the syndromes are much more rare than others. Here is a sampling of 10 that fall into that latter category. Book’s Syndrome – 1 person Signs and symptoms include failure of premolars…
Be Happy That You Are You
You are who you are for a reason. You’re part of an intricate plan. Be happy that you are you. We certainly are! I remember as I was growing up thinking, “Gee, I wish I was more athletic, prettier or smarter.” Even now, I wish I was shorter so I could wear those sexy, stiletto…
Top 10* Most Common Ectodermal Dysplasias
* The numbers are taken from the National Foundation for Ectodermal Dysplasias (NFED) database and are not based on medical literature. There are more than 180 distinct types of ectodermal dysplasias cited in the literature. 1. Ectodermal Dysplasia, Specific Type is Unknown by the NFED – 3,168 People Almost half of the people on the NFED…
Nothing Can Replace the Human Connections and Interactions
By Kristin Matus-Kelso I first attended the NFED National Family Conference in 2006 when my youngest daughter, Ally, who is affected with EEC syndrome was just 1 1/2 years old. I remember questioning myself that year as to whether I should attend, was this really “necessary” since she was so young and wouldn’t remember it…