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…
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…
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…
She Was One of the Founding Families as a Toddler in 1981. Today, She’s an Advocate for the Community.
Hi there, My name is JoAnna Nix and I volunteered last fall to help represent the NFED at my local Combined Federal Campaign (CFC) and State Campaigns. The NFED is known as the Skin and Dental Dysfunction Foundation #10604 by the CFC. Being a government employee, I’ve seen that government workers really do care about their communities and want…
Together, We Will and Can Make a Difference!
By Julie Claeys When our son, Carver, was diagnosed in 1995 with hypohidrotic ectodermal dysplasia (HED) at just four months old, we found the NFED. I remember talking with Beverly from the foundation and her peaceful, calming voice assured me that they were there for us. It wasn’t long before I found myself selling raffle…