Join us as we take a stroll down memory lane and explore some of our major accomplishments over the past 40 years.

NFED History

1981
National Foundation for Ectodermal Dysplasias Founded
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
First Family Conference Held
First Family Conference Held

12 families from 5 states gathered in Belleville, Illinois.

1983
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
A Family Guide to the Ectodermal Dysplasias Is Published
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
The EDucator Newsletter
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
First person receives assistance for dentures via Treatment Fund
First person receives assistance for dentures via Treatment Fund
1989
First Research Grant Awarded
First Research Grant Awarded

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

1991
The 999 Club Launches to Raise Research Money
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
The NFED Serves Families in 20 Countries
1994
110 Volunteers Regularly Help the NFED
110 Volunteers Regularly Help the NFED
1995
First Dental Treatment Centers Established
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.

1996
Gene for XLHED Identified
Gene for XLHED Identified

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

1998
Published A Multi-Syndrome Guide to the Ectodermal Dysplasias
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
First Affected Women’s Research Survey Taken
First Affected Women’s Research Survey Taken

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

2000
Family Conference Held in England
Family Conference Held in England

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

2001
First Halloween Bash Raises $300,000
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
2002
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
Hosted Landmark Skin Erosion Workshop
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.

Lionel Learns What Matters Most Published
Lionel Learns What Matters Most Published

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.

2004
First Ectodermal Dysplasias Awareness Month Held
Access to Oral Health Care for Individuals Affected by Ectodermal Dysplasias Conference
Access to Oral Health Care for  Individuals Affected by Ectodermal Dysplasias Conference

The NFED convenes dental experts to identify obstacles to oral health care and solutions for individuals with ectodermal dysplasias.

2005
Budget Exceeds $1 Million

Funding from the Halloween Bash enables NFED to expand research, treatment and program support.

2008
International Conference for Ectodermal Dysplasias Classification Held
International Conference for Ectodermal Dysplasias Classification Held

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.

2009
Largest Gathering of Families in History To Date
Largest Gathering of Families in History To Date

351 people attended Family Conference in Williamsburg, Virginia.

2010
Ectodermal Dysplasias International Registry Launched
Ectodermal Dysplasias International Registry Launched

The Registry is created to help advance ectodermal dysplasias research and alert patients to clinical trials.

NFED Founder Mary K. Richter Retires
NFED Founder Mary K. Richter Retires

Mary Kaye served as executive director for 30 years.

2013
Newborn XLHED Clinical Trial Begins
Newborn XLHED Clinical Trial Begins

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.

2014
Mary Fete Becomes Executive Director
Mary Fete Becomes Executive Director

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!

2015
Goltz Syndrome Research Project
Goltz Syndrome Research Project

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.

2016
Three Babies With XLHED Treated and Develop Sweat Glands
Three Babies With XLHED Treated and Develop Sweat Glands

Preliminary data shows that three babies with XLHED develop normal sweat glands after receiving in-utero treatment with ER-OO4 protein.

2017
First Advocacy Day on Capitol Hill
First Advocacy Day on Capitol Hill

175 people stormed Capitol Hill to educate legislators about ectodermal dysplasias and their need for health benefits for medical and dental care.

2018
The Ensuring Lasting Smiles Act First Introduced in Congress
The Ensuring Lasting Smiles Act First Introduced in Congress

This federal bill would close an insurance coverage loophole for people born with congenital anomalies who need complex oral restorative care and medical care.

2020
Family Conference Canceled Due to Pandemic
Family Conference Canceled Due to Pandemic

The NFED hosted its first-ever virtual Kays’ Kids Camp.

2021
International Ectodermal Dysplasias Research Conference Held in North Carolina
International Ectodermal Dysplasias Research Conference Held in North Carolina

Researchers and scientists from around the world participated in a landmark meeting. They prioritized research needs and created plan to collaborate.

Phase II Clinical Trial for XLHED Begins in Germany
Phase II Clinical Trial for XLHED Begins in Germany

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.

2022
Webinar Series Enables Virtual Education
Webinar Series Enables Virtual Education

Families learn from medical and dental experts through online webinars.