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…
"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….
35th Anniversary Celebration: A Magical Night for the NFED
Thank you so much to everyone who participated in our 35th Anniversary Celebration dinner! We are happy to say we surpassed our goal of $50,000 by raising more than $62,000 for our mission. Thank you all for your support and for making the event a success. We had more than 250 attendees who enjoyed our silent auction, mystery…
Exciting Announcement! The NFED Qualified
By Lea Richardson What for you may ask? We are pleased to announce that the NFED has been approved as an official Certifying Organization for The President’s Volunteer Service Award (PVSA). The Bureau of Labor Statistics estimates the value of volunteer time to be $23.56 per hour. Our helping hands have made an immeasurable impact…
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…
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…