Join us as we take a stroll down memory lane and explore some of our major accomplishments over the past 40 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.
12 families from 5 states gathered in Belleville, Illinois.
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 three Dental Treatment Centers are established at Southern Illinois University at Edwardsville, Saint Louis University and University of North Carolina.
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.
Alice Geismar wrote this children’s storybook about Lionel who is different from the other lion cubs, and that makes him sad. But over the course of this heart-warming story, Lionel learns that what’s on the inside is more important than a bushy mane. Anyone who’s ever felt different will relate to Lionel and be inspired by his story.
The NFED convenes dental experts to identify obstacles to oral health care and solutions for individuals with ectodermal dysplasias.
Researchers and physicians from around the world convened at the International Conference for Ectodermal Dysplasias Classification to develop new system for classifying the ectodermal dysplasias.
351 people attended Family Conference in Williamsburg, Virginia.
The Registry is created to help advance ectodermal dysplasias research and alert patients to clinical trials.
Mary Kaye served as executive director for 30 years.
Edimer Pharmaceuticals doses 10 newborn males with a therapy called EDI200 (presently named ER-OO4). Ultimately, findings show that the treatment was not effective given after birth.
Today, Mary Fete leads the NFED and carries out the vision that the first dozen families had back in 1981: to be a resource for the ectodermal dysplasias community and to assure its families that they are never alone!
Sixteen individuals participate creating growth data on the largest group of children with Goltz. It led to the finding that confirmed short stature as part of the syndrome and identified underlying treatable causes.
Preliminary data shows that three babies with XLHED develop normal sweat glands after receiving in-utero treatment with ER-OO4 protein.
175 people stormed Capitol Hill to educate legislators about ectodermal dysplasias and their need for health benefits for medical and dental care.
This federal bill would close an insurance coverage loophole for people born with congenital anomalies who need complex oral restorative care and medical care.
The NFED hosted its first-ever virtual Kays’ Kids Camp.
Researchers and scientists from around the world participated in a landmark meeting. They prioritized research needs and created plan to collaborate.
EspeRare and Pierre Fabre begin EDELIFE, a phase II clinical trial for XLHED, with site in Germany. Purpose is to confirm Dr. Holm Schneider’s findings from treating three babies prenatally with ER-004.
Families learn from medical and dental experts through online webinars.