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…
The Battle of Hair
By Terri Andrews When I was a little girl, my hair was slow to come in and grow. Once it did grow, it was so blonde it looked white and stuck up everywhere. It was hard to manage. My momma would put Vaseline on my hair just to try to lay it down. When I…
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. …
Top 10 Reasons to go to Family Conference
10. Be inspired or be inspiring! 9. Have an experience you will never forget, like dancing Gangnam Style on stage with all your friends. 8. Meet the family liaisons and enjoy their opening ceremony antics! 7. Meet the NFED staff in person! 6. Show off your talents during the talent show! 5. Learn new ways to care for…
Many Hands Make the Work Light
If I heard my mom say it once, I heard it at least a thousand times growing up… “many hands make the work light.” It became a family mantra of sorts and instilled in me a lifelong sense of volunteerism. Mom also used to always say, “Although you may have nothing else to give, you…