In 1981, Mary Kaye Richter and 12 other families affected by ectodermal dysplasia organized and founded the National Foundation for Ectodermal Dysplasias (NFED). In its first years, the NFED gathered and published accurate information on the conditions and established a support network of affected families. In 1985, the Foundation expanded its mission to funding seed grants for ectodermal dysplasia research and providing researchers with access to clients. Two years later, the Foundation began providing financial assistance for medical and dental care through the Treatment Fund, which is now called the Treatment Assistance Program. In 1995, the L. Marie Heard Education Scholarship Program was established to help affected individuals attain post secondary education and the Dental Implant Program, now called the Dental Treatment Centers Program began.
The NFED has grown considerably since the early 1980s, a time when little was known about the rare conditions and the medical literature cited only a half dozen affected individuals in the United States. Today, more than 5,800 families in 72 countries are in touch with the Foundation. In 1996, a successful International Symposium on the Ectodermal Dysplasias was held at the National Institutes of Health. A 2002 Skin Erosion Workshop co-sponsored by Saint Louis University described the often life threatening condition experienced by children affected by Ankyloblepharon-Ectodermal Dysplasia-Clefting (AEC) syndrome and outlined treatment protocols. An expanded International Research Symposium on AEC in 2006 with Texas Children’s Hospital and Baylor College of Medicine co-sponsoring enabled us to collect extensive data, biopsies and hair samples on 25 individuals affected by AEC for analysis and research. During the past 23 years, the NFED has funded more than $1 million in research at 40 centers around the world. Funded research projects have identified genes for several ectodermal dysplasia syndromes.
Helping affected families access quality and affordable oral health care has been an ongoing focus at the NFED. In the early years, it meant providing information to families that children could successfully wear dentures. Over the years, efforts expanded to educating professionals, maintaining a database of names of care providers and funding treatment. Thousands of copies of NFED publications have been mailed to professionals and professional symposia on the ectodermal dysplasia syndromes have been sponsored at seven universities. The NFED has provided clients with more than $1 million in assistance for needed care as well as hair prosthetics and air conditioners.
To reach its goals, the NFED has collaborated with many professional organizations such as the American Academy of Dermatology, Friends of the National Institute of Dental and Craniofacial Research, National Oral Health Information Clearinghouse, and Society for Investigative Dermatology. In addition, the Foundation is affiliated with the Coalition of Skin Diseases, the Genetic Alliance, National Health Council, the National Organization of Rare Disorders and Research!America.
The NFED is proud of all of its accomplishments. Perhaps our greatest success comes from providing individuals and families affected by ectodermal dysplasia with a place to turn for reliable information, support and hope.