Mary Kaye Richter – In Memoriam

The Santa Fe Group members were deeply saddened to learn that Mary Kaye Richter, founder and executive director of the National Foundation for Ectodermal Dysplasias (NFED), died in her home in Trenton, Illinois, on November 24, 2022. She had been diagnosed with terminal cancer just one week before her passing, at the age of 77. She was a dear colleague, treasured mentor, and inspiration to many of our members and a true champion of science-based patient-centered care that integrates oral and systemic health.

Universally respected, admired, and loved throughout the rare disease community, Mary Kaye was a tireless patient advocate and passionate medical crusader.

A member of a proud farm family, until 1979 Mary Kaye was accustomed to a private life devoted principally to caring for her home and her family, which she helped support through her work as a florist. Soon after the birth of her youngest son Charley, however, she was confronted with unexpected challenges that dramatically changed her life and its scope. When Charley was 18 months old, Mary Kaye learned that he had a rare disease called hypohidrotic ectodermal dysplasia. At the time of his diagnosis, research was sparse and no support networks existed.

Ectodermal dysplasias are a group of rare genetic conditions characterized by defects of ectodermally derived structures, including the sweat glands, hair, nails, and teeth. Individuals with these disorders have at least two such defects, and may have malformed teeth, extremely sparse hair, or an inability to perspire.

Galvanized by her determination to get her son the medical care he desperately needed—and to get answers about this rare disease—Mary Kaye set about to create a support network herself. From her home in rural Illinois, she began in 1981 what would ultimately become a global foundation for families with children with this rare disease.

Under Mary Kaye’s leadership, the NFED’s mission has centered on support, education, and research. Fund-raising for medical research has been one of the most important goals of the foundation, while the NFED has also been dedicated to providing families with information and “someone to turn to.” But Mary Kaye’s greatest passion was ensuring that children with ectodermal dysplasias received the dental care that they needed. Adept at navigating systems to achieve the NFED’s goals, she traveled to Washington DC to advocate for families of children with this rare disease. Over three decades, she served on numerous committees and boards for national entities such as the National Institute of Dental Craniofacial Research, America’s Fund for Dental Health, and the National Oral Health Information Clearinghouse. She also helped with the launch of the National Alliance for Oral Health.

One of her first missions at the NFED was to convene a Scientific Advisory Council comprised of medical and dental care providers, with whom she worked to create educational resources and launch research programs.

Many members of the Santa Fe Group had the privilege of knowing, working with, and learning from Mary Kaye Richter. She taught us the power of listening to and learning from patients and their caregivers. She used her personal story and family experience with ectodermal dysplasia to create a gathering place and “home” for other families, nationally and internationally, who felt alone with their condition. Because feelings of isolation are especially prominent for those struggling with a rare disease, her achievement in creating a sense of community for patients with ectodermal dysplasias and their families has been one of monumental importance. In the early years, it also helped bring about many learnings about the diversity of these conditions.

Mary Kaye inspired us by her detailed and strategic advocacy and actions. Her approach involved informing and stimulating clinicians, scientists, educators, healthcare administrators, and policymakers into action and bringing these often-siloed groups together to meet with families. This inclusive approach has supported necessary, effective, and efficient cross-communication among these groups. It has also highlighted the critical need to integrate oral health and systemic health with regard to clinical care, science, and health policy. While she gracefully used her strength and perseverance to create the National Foundation for Ectodermal Dysplasias, Mary Kaye did not stop there. A leader among leaders, she mentored other patient advocacy groups and stimulated them to work together to give the “patient’s, consumer’s, and caregivers’” voice to research, practice, and healthcare reimbursement needs. Mary Kaye Richter has left an amazing legacy. We are indebted to her for the many lessons she has bestowed upon us, and we thank her for sharing her laughter, passion for equity, and grace with us.

May her son Charley and the rest of her family find peace with time.

For more information and reminisces on Mary Kaye’s life and legacy, please click here.


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