The National Foundation for Ectodermal Dysplasias’ fearless leader is celebrating her 20th anniversary as part of the Foundation staff! Today, we celebrate all that Mary Fete, MSN, R.N., CCM, has accomplished and continues to do on behalf of the ectodermal dysplasias community worldwide.

Mary officially joined the staff on February 27, 2002. The NFED’s founder, Mary Kaye Richter, reminisced about how she found the perfect person for the new part-time position she was creating at the time.

With a background in nursing and case management, Mary had the perfect skill set for being NFED’s new Manager of Treatment and Research. When you add in the fact that she has such a big heart, she was a great asset for our families.

She hit the ground running and soon worked full-time. In treatment, she worked with families to help them get financial assistance for their dental care, wigs and cooling vests. Mary compassionately guided families in how to get dentures for their child and how to pay for them.

Our first and current executive directors – Mary K. Richter and Mary Fete

A Commitment to Treatment and Research

One of her earliest projects was convening the NFED’s Access to Oral Health Care Conference in 2004. It brought together dental experts from across the United States to identify the reasons why individuals affected by ectodermal dysplasias might not get the dental care they need and create solutions.

That meeting of the minds would be the first of many that Mary led to find answers that would improve families’ lives. Findings from other landmark research meetings she led better described ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome and Goltz syndrome in the medical literature and developed a classification system for ectodermal dysplasias to be diagnosed more easily. Last year’s International Ectodermal Dysplasias Research Conference set the stage for NFED’s long range research agenda. She has a knack for networking to find the right people in medicine and science to collaborate and advance research and treatment.

Anil Vora and Mary
Karl Nelsen and Mary
Dr. Tim Wright and Mary

A Fearless and Compassionate Leader

In 2014, the Board of Directors promoted Mary to Executive Director which continues to be her role today. Dr. J. Timothy Wright, a pediatric dentist and researcher at the University of North Carolina Chapel Hill and member of the NFED’s Board of Directors and Scientific Advisory Council, knows Mary’s strong work ethic well.

Having worked with Mary on many NFED initiatives including scientific and family conferences, patient care, publications, education, and pushing political agendas to support research and policy directed at helping people with ectodermal dysplasias, it is abundantly clear that her dedication and motivation comes from the heart. She is passionate about her mission to help people and has adopted the families of people associated with ectodermal dysplasias as her own. Mary K. Richter was a hard act to follow, but I can’t imagine anyone filling those shoes better than Mary Fete. It has been an honor to serve with her these many years and help support her as she works tirelessly to help the NFED and the families the organization serves. Congratulations on your 20 years of dedicated service. Cheers!”

Dr. J. Tim Wright, NFED Board and Scientific Advisory Council Member

The NFED’s research program flourished as Mary led initiatives to find answers for multiple syndromes. One of the first syndromes she focused on was AEC syndrome and creating treatment protocols for the potentially life-threatening skin erosions it caused. Professor Maranke Koster, an AEC researcher, is grateful for Mary’s efforts.

“During my 15-year year tenure on the NFED Scientific Advisory Council, I have admired Mary’s dedication to improving the lives of individuals affected by ectodermal dysplasias,” Koster said. “In addition to supporting patients and families on a daily basis, Mary is also the driver of the long-term vision of the NFED to support research aimed at developing innovative new treatments for future generations. On a personal note, I admire Mary’s tireless energy and forward-thinking mindset, and feel incredibly fortunate to work with her and to be able to call her my friend.”

Raising Awareness Worldwide

Maranke is right. Mary is the Energizer™ bunny! Anyone who has seen her in action knows she has boundless energy and works hard. As an executive director, she has made a positive impact on every area of the Foundation. The number of Dental Treatment Centers has increased, the Ensuring Lasting Smiles Act (ELSA) has advanced in Congress, and a potential treatment with life-changing effects for x-linked hypohidrotic ectodermal dysplasia (XLHED) is in clinical trial by the EspeRare Foundation and Pierre Fabre. She has co-authored numerous medical journal articles which document NFED research and scientific findings about ectodermal dysplasias. Her accomplishments are simply too many to list. Like Mary Kaye before her, she’s made a name for herself in the international ectodermal dysplasias community.

Marianne Vermeer, an NFED mom and board member, said, “NFED is what it is today because of Mary. Our success in connecting to research and navigating the pandemic as a small nonprofit is due to Mary’s leadership and passion for this organization. I am grateful beyond words for her commitment to NFED!”

Watch Our Tribute to Mary!

Whether it’s raising needed funds or creating partnerships with companies and like-minded organizations, one intention always guides her: helping families affected by ectodermal dysplasias. It’s heart-fueled work for her.

Long-time NFED member, dad and board member Anil Vora said, “It has been a pleasure to see Mary and the NFED grow together. I think of the following words: passion, drive and integrity, when working with Mary. Thanks from the families and the kiddos.”

Karl Nelsen, NFED Board President said, “Mary leads the NFED with com[passion]. We are very blessed for her contributions over the last 20 years. Thank you, Mary.”

Leading the NFED Into the Future

Mary has expanded the NFED staff to eight people, most of whom have worked remotely since the pandemic began.

As staff members, we get to see Mary behind-the-scenes, and what stands out is her compassion. She is extremely dedicated to the NFED’s mission and all individuals and families affected by ectodermal dysplasias. Every caring word she shares comes authentically from the heart. Mary cares deeply about our community, puts their needs first, and sets a shining example to follow.”

NFED Staff

Thank you, Mary, for loving our NFED family so fiercely and working so tirelessly to give them the information and resources they need. As we celebrate the NFED’s 40th anniversary, we are excited to see where your vision and leadership will take us into the future.

Help us show some anniversary love to Mary! In the comments below, share a story you have about Mary or send her well wishes. 

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