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,…
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…
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…
Cool Activities for a Hot Summer
Summer time is upon us and that means there will be some incredibly hot days. For those of us that can’t sweat properly, it’s especially important to have some cool activities for those hot summer days. We allowed Mister, our 6 year old that is affected by Hay Wells Syndrome, to join the swim team. …