By Terri Matus, Grandma of Allyson Kelso, Member, Family Support Council and Co-Chair for Rally for Ally There are many reasons to volunteer one’s time for an organization. The obvious one is to be helpful and to assist others in order to enhance the programs provided by the organization, namely, the NFED. I like to think…
We are Family! My Brothers, Sisters and Me!
By Chris and DeAnn Huxman In 2001, our second son, Tyler, was born with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. We had never heard of EEC, had no information about it, and had no idea what the future would hold. We didn’t know where to turn or where to find information. While searching the web for anything about EEC,…
Ectodermal Dysplasias: How Nails Can Be Affected
The nails in some types of ectodermal dysplasia may be… poorly developed, small, thick or thin, brittle, discolored, cracked, abnormally curved, or ridged. In addition, they may grow slowly or shed periodically and may develop light spots, lines, or patches. The nails and surrounding cuticle area may become infected by fungus, yeast, or bacteria. If…
Pen Pals Across the Pond!
By Peter Brennan New South Wales, Australia When our children, Alice and Tom, were born, we were fairly sure where the parenting phase of our lives would take us. We would live in our little house in Sydney. Our children would go to the local school. We would celebrate birthdays and the holidays. We thought…
Dear NFED volunteers,
We can’t think of a lovelier way to acknowledge all of the hard work you do than by setting aside the month of April to recognize and thank you and all of our volunteers. Just last year alone we had 364 volunteers who dedicated more than 3,652 hours to the NFED. That is truly amazing! …
Need to be Needed? Beverly Meier's Response?
By Cathy Deters The year I retired from a teaching career (2008), I knew I would need to do something to occupy the time I had spent in the classroom. There was a void in my life and I wasn’t sure how to fill it. My dear friend, Beverly Meier, suggested that I volunteer for…
My Story: Emotional Resilience and Hope
by Marcela Hernandez Lack of confidence has daunted me all my life, from childhood and even into my adult life. I was born and raised in Uruguay, a small country in South America, the youngest child of a middle class family. They supported me and gave me everything within their possibilities, from material things such…
Why I Volunteer for NFED: My Son and Others Like Him
By Jill Radley I found the NFED in 1992, upon the recommendation of my childhood dentist at the University of Minnesota. When I received the literature packets I had a light bulb moment. I looked at the pictures and I felt that I was looking in the mirror. It explained so much to me. I…