From Shy to Smiling Spokesperson for Ectodermal Dysplasias

By Dawn Richardson I rarely had to trim Savannah’s toenails after she was born, and her fingernails were thin and brittle. I had very little experience with infants, so I did not realize this is not typical of children.  Her baby teeth erupted mostly on schedule.  Aside from being small and missing a set of…

A Leap of Faith to Open Ourselves

By Nancy Nelsen, Guest Blogger We attended the National Foundation for Ectodermal Dysplasias (NFED) Family Conference during the summer of 2015 in Colorado Springs.  Neither of us, my husband, Karl and I, were prepared for the emotions that filled us as we listened to other families’ stories, and told our own. We felt supported, connected…

An Anniversary Gift for You

As you know, in 2016 the National Foundation for Ectodermal Dysplasias (NFED) community is celebrating our 35 anniversary!   This year, we celebrate 35 years of NFED success.  Over the years we have added tremendously to the body of knowledge of ectodermal dysplasias, made great strides in treatment and have had tremendous research successes. Thirty-five years…

A Shot of Courage and Lavender Cooling Mist

By Liz Timmerman Just over a year ago, my youngest daughter, Violet, was diagnosed with hypohidrotic ectodermal dysplasia at the age of one year old. The first year of her life was filled with many challenges and I was seriously starting to doubt my abilities as a mother because my baby was always so unhappy, couldn’t…

We Volunteer So Others Don’t Feel Lost

by James Kluzek We were asked why we volunteer for the NFED. It all started November 16, 2000 when our daughter, Christina, was born with a genetic disorder called Goltz syndrome. This day changed our lives forever. We had never heard of this syndrome and more importantly most of our doctors knew nothing about it either….

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