Advocacy That Listens: Building Trust, Research, and Relationships for Rare Diseases
In this heartfelt episode of Chief Influencer, host Anthony Shop sits down with Mary Fete, Executive Director of the National Foundation for Ectodermal Dysplasias (NFED). A registered nurse by training, Mary shares how listening has been the foundation of her leadership, fueling a global nonprofit that spans 120 countries and supports thousands of families affected by rare disorders. She reflects on the transformative power of empathy, the importance of collaboration over expertise, and her role in pioneering medical breakthroughs, including a historic clinical trial for XLHED. As she prepares to pass the baton after more than two decades, Mary discusses her hopes for the future and what it truly means to lead with heart.
Key Takeaways
- Leadership Begins With Listening: Mary emphasizes that listening is both a clinical and leadership skill. Her philosophy of “listen first, talk less” has shaped NFED’s programs, research, and family support systems.
- You Don’t Have to Be the Expert: True influence comes from bringing the right people into the room. Mary models collaborative leadership by creating spaces where diverse experts—and lived experiences—drive innovation.
- Global Impact Starts With Personal Connection: Despite serving families in over 120 countries, NFED remains deeply personal thanks to Mary’s intentional relationship-building and trust-first approach.
- Technology as a Humanizing Tool: From AI advisory boards to using databases to remember personal family milestones, Mary shows how nonprofits can leverage tech to enhance—not replace—authentic relationships.
- From Seed Funding to Scientific Breakthroughs: NFED’s 30-year commitment to research led to the groundbreaking EDELIFE clinical trial, showing how a small nonprofit can play a central role in global medical advances.
- Storytelling Drives Advocacy: Mary empowers families to share their lived experiences to influence policy and funding, reinforcing that personal stories are powerful tools for public impact.
- Legacy of Heartfelt Leadership: As she prepares to step down, Mary hopes to be remembered not for titles or milestones, but for leading with compassion, listening deeply, and creating a true sense of family and belonging.
Quote of the Show:
- “You have to remind yourself that listening is much more powerful than talking… You don’t have to fill the space in the room with your voice all the time.”
Links:
- LinkedIn: https://www.linkedin.com/in/mary-fete-19949a33/
- Website: https://nfed.org/
Creators and Guests
Host
Anthony Shop
Anthony Shop believes in the power of people-centered branding and marketing to create a bright future. He chairs the National Digital Roundtable, the premier convener of digital innovators, leaders and policy shapers. Anthony also is the Co-Founder and Chief Strategy Officer of Social Driver, a digital services firm that helps companies and non-profits establish winning strategies with social media, websites, creative, and advertising. An enthusiastic presenter and teacher, he has led executive-level training for Amazon, PepsiCo, NASA, The British Embassy and the Bipartisan Policy Center. He has been recognized as an “OUTstanding LGBT Role Model” by The Financial Times, “40 Under 40” by The Washington Business Journal, and Business Leader of the Year by the DC Chamber of Commerce. A former newspaper reporter, Anthony was the first new media professional elected to the National Press Club’s Board of Governors. He currently serves on the boards of Leadership Greater Washington and LearnServe International. He earned his MBA from The George Washington University School of Business, where he teaches as an adjunct lecturer.
Producer
Robert Krueger
Robert is an Executive Director for The Communications Board, an organization with the mission of providing high-quality professional development for every communicator in every location. He is also the Global Lead for Partnership Communications at Gensler, the world’s largest architecture and design firm. Prior to his current role, he performed executive and CEO communications for Gensler, and was the senior director of public relations and social media at the Urban Land Institute. He obtained an MA in Communications and an MA in History from George Mason University. He did his undergraduate studies at the University of Missouri-Columbia. In addition, Robert has taught communications at universities including George Mason University, West Virginia University, and the University of Florida. Robert currently serves as Immediate-Past President for the Public Relations Society of America’s National Capital Chapter (PRSA-NCC) -- the nonprofit’s largest chapter.