45 Years of the NFED

Join us as we take a stroll down memory lane and explore some of our major accomplishments over the past 45 years.

NFED History

1981

December 24

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.

1982

February 1

First Family Conference Held

12 families from 5 states gathered in Belleville, Illinois.

1983

January 1

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.

1984

January 1

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.

1986

January 1

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.

1987

January 1

First person receives assistance for dentures through the Treatment Fund

1989

January 1

First Research Grant Awarded

Dr. Jon Zonana at Oregon Health Sciences University is granted $10,000 to study XLHED gene identification.

1991

January 1

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!

1993

January 1

The NFED Serves Families in 20 Countries

1994

January 1

110 Volunteers Regularly Help the NFED

1995

January 1

The First NFED Website Launches

Membership explodes as families around the world find the organization.

January 1

First Dental Treatment Centers Established

The first three Dental Treatment Centers are established at Southern Illinois University School of Dental Medicine, Saint Louis University and University of North Carolina.

1996

July 1

Gene for XLHED Identified

The EDA gene is identified for x-linked hypohidrotic ectodermal dysplasia, enabling carrier testing and improved family planning.

1998

January 1

Published A Multi-Syndrome Guide to the Ectodermal Dysplasias

This new, comprehensive guide puts forth a new approach to the classification of the conditions.

1999

March 1

First Affected Women’s Research Survey Taken

278 women complete the first research survey on how ectodermal dysplasia affects females.

2000

August 16

Family Conference Held in England

The Family Conference is held outside the United States for the first time in Leistershire, England.

2001

October 30

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.

December 31

The NFED serves 3,000 families in 53 countries

2002

January 1

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.

2003

September 18

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.