Join us as we take a stroll down memory lane and explore some of our major accomplishments over the past 40 years.
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National Foundation for Ectodermal Dysplasias Founded
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.
First Family Conference Held
12 families from 5 states gathered in Belleville, Illinois.
Barry Manilow donates $1,000 to start Treatment Assistance Program
The new program provides financial assistance to help children get dentures. He allows NFED to use his lyrics “We can’t smile without you” as its new slogan.
A Family Guide to the Ectodermal Dysplasias Is Published
With little to no prior printed information, families were grateful to have this guide to use and share with physicians, dentists and schools.
The EDucator Newsletter
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.
First person receives assistance for dentures via Treatment Fund
First Research Grant Awarded
Dr. Jon Zonana at Oregon Health Sciences University is granted $10,000 to study XLHED gene identification.
The 999 Club Launches to Raise Research Money
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 NFED Serves Families in 20 Countries
110 Volunteers Regularly Help the NFED
First Dental Treatment Centers Established
The first three Dental Treatment Centers are established at Southern Illinois University at Edwardsville, Saint Louis University and University of North Carolina.
The First NFED Website Launches
Membership explodes as families around the world find the organization.
Gene for XLHED Identified
The EDA gene is identified for x-linked hypohidrotic ectodermal dysplasia, enabling carrier testing and improved family planning.
Published A Multi-Syndrome Guide to the Ectodermal Dysplasias
This new, comprehensive guide puts forth a new approach to the classification of the conditions.
First Affected Women’s Research Survey Taken
278 women complete the first research survey on how ectodermal dysplasia affects females.
Family Conference Held in England
The Family Conference is held outside the United States for the first time in Leistershire, England.
First Halloween Bash Raises $300,000
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.
The NFED serves 3,000 families in 53 countries
Advocated in Congress for NIH Funding
NFED staff and volunteers made Congressional visits asking for increased research funding for both the skin and dental institutes at the National Institutes of Health.
Hosted Landmark Skin Erosion Workshop
Hosted the first Skin Erosion Workshop in St. Louis seeking to better understand AEC syndrome and skin erosion. First treatment protocol established.