By Cory Jonak, Former Intern & Current Volunteer Throughout the course of our lives, we all will inevitably experience moments that have lasting impacts on us. While some of these moments are explicit and stand out, others can be more subtle and happen in an instant. However, no matter how small or big these moments,…
Ronan, Our Unborn "Celtic" Legend…What a Shock and a Joy!
By Dennis Claire, D.P.M., Father of Denny and soon to be Ronan Well before she was pregnant, my wife said, “If it’s a boy, he’ll be named Ronan.” Our first son, Denny, had a name which was predestined through generations of naming a son in the family Dennis. I didn’t want to break Irish tradition, and…
Growth and Nutrition for Children with Ectodermal Dysplasias
(This is an excerpt from A Family Guide to the Ectodermal Dysplasias Syndromes, published by the NFED.) Growth abnormalities are common in children with ectodermal dysplasias. Weight deficits are present at an early age and persist throughout adolescence. Height deficits are seen primarily in children with ectodermal dysplasias other than hypohidrotic ectodermal dysplasia (HED). Parents…
Overwhelmed With Love and Belonging!
By Terri Andrews I was born in a little rural area in Alabama in 1959. Not much was known about ectodermal dysplasia nor the type of ectodermal dysplasias I was born with called ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. If I received any type of major treatment or surgery, I had to travel at least 100 miles, which was not…
The True Meaning In Life Is To Plant Trees, Under Whose Shade You Never Expect To Sit!
By Ashli Matus-George Allyson Kelso’s Aunt Founder, Rally for Ally When Ally was born on December 22, 2004 in Oxnard, CA, it was an exciting time. A new baby, Christmas for her three-year-old big sister, Morgan. My then fiancé, Tom, and I were recently engaged and planning a wedding, Kristin had a thriving career, and…
A Little Step May Be the Beginning of a Great Journey!
By Jennifer Hagerty Have you ever thought about how you can make a difference to the NFED and the families they serve? As a NFED family liaison, I have thought about it many times. I am a busy mom who is going to school as well as taking care of my two young boys. Needless to…
NFED Class of 2015– We Are So Proud!
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…
Support Each Other: We are Family!
By Josh Long Why do we donate our time and money to the NFED? Because the NFED is family! Two years ago, we attended our first Family Conference in Orlando, Fla. through a very generous NFED scholarship. The conference was a life-changing event for our entire family. We had mom, dad, son, daughter, grandma and grandpa in attendance. …