Join us as we take a stroll down memory lane and explore some of our major accomplishments over the past 45 years.
NFED History
In 1981, Mary Kaye Richter and 12 other families affected by ectodermal dysplasias organized and founded the National Foundation for Ectodermal Dysplasias (NFED) in Mascoutah, Illinois. Mary Kaye’s toddler, Charley, had been diagnosed with hypohidrotic ectodermal dysplasia, and she was looking for answers on how to best take care of him.
With little to no prior printed information, families were grateful to have this guide to use and share with physicians, dentists and schools.
Mary Kaye’s family letter turns into a monthly newsletter named “The EDucator.” It’s mailed to 340 homes in 43 states and eight countries.
Dr. Jon Zonana at Oregon Health Sciences University is granted $10,000 to study XLHED gene identification.
Dr. Art Nowak donates $100 and challenges NFED to get 999 more $100 gifts to raise $100,000 for ectodermal dysplasias research. The 999 Club forms!
The first Dental Treatment Center is established at Southern Illinois University School of Dental Medicine. It was originally called the Dental Implant Program.
The EDA gene is identified for x-linked hypohidrotic ectodermal dysplasia, enabling carrier testing and improved family planning.
This new, comprehensive guide puts forth a new approach to the classification of the conditions.
278 women complete the first research survey on how ectodermal dysplasia affects females.
The Family Conference is held outside the United States for the first time in Leistershire, England.
The Geismar family hosts the first Halloween Bash in Manhattan, NY raising $300,000. The event is held in honor of their son, Ryan, who is affected by AEC syndrome.
Hosted the first Skin Erosion Workshop in St. Louis seeking to better understand AEC syndrome and skin erosion. First treatment protocol established.