By Mary’s Fan Club (The NFED Board of Directors and Staff)
Mary Fete retires at the end of the month as the executive director of the National Foundation for Ectodermal Dysplasias (NFED). As we reflect on her many years of service, it’s clear that Mary has changed the NFED in powerful ways. And she did it all with kindness, courage, and a deep love for our community.
Mary’s story with the NFED began back in 2001. Dr. Clark Stanford recalls sitting in a Scientific Advisory Council meeting when the late Mary K. Richter, NFED’s founder, said the staff needed a person to help grow the research program. Pediatrician, Dr. Tim Fete spoke up and said, “I think I know the right person.”
That person was his wife, Mary Fete, M.S.N., R.N., C.C.M.
Jumping into Research Leadership
In February 2002, Mary, a nurse and case manager, arrived at the NFED office in Mascoutah for her first day of work. She met with Mary Kaye, who told her she wanted the Foundation to host a research conference to address the painful skin erosions experienced in AEC syndrome.
Mary asked, “How do I do that?” and Mary Kaye said, “You’ll figure it out!”
And she did. Mary not only planned one scientific conference, she led three. The meetings created treatment protocols that literally saved lives of people affected by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome. They also sparked research exploring how stem cells might prevent the painful wounds.
Anthony Shop interviewed Mary on the Chief Influencer Podcast about her leadership at the NFED.
Growing the NFED into a Research Leader
Under Mary’s leadership, the research program didn’t just grow. It soared. She helped make the NFED a world leader in ectodermal dysplasias research. Working with the SAC, Mary led nine scientific conferences that jump started new research areas, classified the syndromes and pushed for answers families had been waiting for. Mary navigated the long and challenging journey of x-linked hypohidrotic ectodermal dysplasia research, steering us to the Edelife Clinical Trial, a major step towards the first treatment of its kind.
Expanding Treatment and Professional Education
Mary’s impact reached far beyond research. She expanded the NFED’s Dental Treatment Centers to more than 20. Furthermore, she also strengthened education for medical and dental professionals by organizing 24 grand rounds and professional symposia. These efforts helped more families get the care they need.
Becoming Executive Director and Leading With Heart
In 2014, Mary became NFED’s executive director. For 11 years, she’s been our fearless and trusted leader. She represented the NFED around the world, guided the Ectodermal Dysplasias International Network (EDIN), and built strong partnerships across the country. She stood up for families, always making sure their voices were heard.
Fighting for Families Through Policy and Advocacy
Mary also helped create new programs and resources to support the growing needs of our community. She played a major role in pushing forward the Ensuring Lasting Smiles Act, advocating so families in the United States will one day receive coverage for the dental care they need.
During the pandemic, Mary guided the NFED team through every challenge and made sure that services never stopped. Under her leadership, the NFED’s budget to $1.1 million and today, the NFED serves more than 11,000 affected individuals in 121 countries. She’s accomplished all of this with a lot of heart and a lot of love for everyone we serve.
A Legacy That Lives On
In Mary Kaye Richter’s last days, she said she knew the NFED would be in good hands with Mary Fete. She was right.
As Mary Fete retires, we celebrate her incredible accomplishments and her unwavering commitment to our ectodermal dysplasias family. She didn’t just carry on Mary Kaye’s vision, she expanded it and made it stronger.
The NFED is ready for its next chapter because of Mary. And for that, we thank her with full hearts. We love you, Mary!
Read Mary’s Farewell MessageHave a comment or question? Contact us.