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…
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…
Come Out and Welcome In
Late one evening while browsing my email, I discovered that someone had sent me a message using the “Contact Me” form on my blog, EEC Chick. So happy to find your blog and that you have dedicated time to help others with EEC. My wife and I just found last week she is carrying a…
All I Want for Christmas is My Two Front Teeth
At Christmastime, I am reminded of many happy childhood traditions and memories. Some of my favorite memories involve snuggling up to watch Miracle on 34th Street, or leaping around the family room in a tutu along with The Nutcracker. (I will gleefully reenact this now, except without the tutu.) When I was growing up, we had…
Ectodermal Dysplasias in the Workplace
Choosing a Career Path with Ectodermal Dysplasias in Mind I’m not very old, but already I’ve experienced a variety of career fields. From an early age I loved to draw, build, create, imagine. I didn’t consciously think about what I wanted to be when I grew up. In fact, that was one of those questions…
Keeping My Cool in Heated Situations
It’s field day! Out in the fresh grass while the sun blazes down from a perfect blue sky, I feel dizzy with excitement. Our team is doing well in the relay races and I’m having fun being outside the classroom. Suddenly, my teacher pulls me aside. “You’re bright red!” She looks panicked. “Come with me,…
Nothing Can Replace the Human Connections and Interactions
By Kristin Matus-Kelso I first attended the NFED National Family Conference in 2006 when my youngest daughter, Ally, who is affected with EEC syndrome was just 1 1/2 years old. I remember questioning myself that year as to whether I should attend, was this really “necessary” since she was so young and wouldn’t remember it…
We Were NOT Treated as Just a Number…We Were Treated as Valued Individuals.
By DeAnn Huxman As I anticipate the 2012 National Foundation for Ectodermal Dysplasias National Family Conference in Florida, I’m filled with excitement for the time together with this group, our other Family. My family attended our first national conference in Kansas City in 2005. We had been interested in attending previous years, but were concerned…