Let’s do something good for the NFED community. Be a part of the growing global #GivingTuesday movement. The Bill and Melinda Gates Foundation will match up to $1,000 per each Facebook fundraiser page for the first $500,000
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…
Maximus’ Story with Goltz Syndrome
After a normal pregnancy, Brandi and Corey knew right away that something was wrong when their son, Maximus was born. He had a wound on the top of his head, fused fingers and a missing toe. The nurses were hesitant to wipe off the newborn in fear his skin may slough up. In this interview,…
"A Cool Experience"
By Liz Timmerman, mother of 2 year old Violet from Michigan. Just over a year ago, my youngest daughter was diagnosed with HED at the age of one years 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…
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….
We Are Flying High!
We just wrapped another life-changing, heartwarming, spirit-lifting Family Conference in St. Louis! What an amazing conference from start to finish. The conference started off with Jack Kriz riding his bike in from Kansas City. He rode 288 miles of bike riding in the awful heat. What dedication to do this ride to raise money for the…