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…
Volunteers are Love in Motion!
By Alanna F. Bree, M.D. Pediatric Dermatologist, A Children’s House for Pediatric Dermatology It has been an honor and a privilege to volunteer as a member and a secretary of the Scientific Advisory Council for the NFED. The organization is a true blessing to so many. They not only do an excellent job of supporting and advocating…