In this episode of Chief Influencer, Anthony Shop sits down with Michael Hund, CEO of EB Research Partnership, to explore how influence, storytelling, and venture philanthropy can accelerate breakthroughs in healthcare. Michael shares the remarkable journey behind EBRP’s innovative, investment-minded model, which has helped expand the epidermolysis bullosa (EB) clinical trial landscape from just two trials to more than fifty and contributed to multiple FDA-approved therapies. The conversation also dives into the unexpected evolution of the Netflix documentary Matter of Time, which brought unprecedented visibility to EB and the broader rare disease community through the power of music, storytelling, and authentic community-building.

Beyond rare disease advocacy, this episode is a masterclass in influence-driven leadership. Michael explains why trust, vulnerability, and transparency are essential to building movements that endure. From lessons learned growing up on a Kansas cattle ranch to scaling a nonprofit like a venture capital firm, he shares how leaders can “run toward the storm,” embrace bold innovation, and create communities that transform visibility into action. The conversation offers valuable lessons for executives, communicators, nonprofit leaders, and entrepreneurs seeking to build trust, inspire action, and drive meaningful change.

Takeaways:

• Visibility Creates Momentum: Rare disease communities often feel invisible, but visibility can become a catalyst for funding, innovation, and systemic change.
• Community Is More Powerful Than Audience: Building true community creates lasting engagement, advocacy, and shared ownership far beyond impressions or awareness campaigns.
• Run Toward the Storm: Great leaders don’t avoid hard problems—they confront them directly, even when outcomes are uncertain.
• Trust Requires Vulnerability: Transparency, honesty, and listening deeply to stakeholders are essential to building durable influence.
• Lead From Behind: Effective leadership is often less about commanding from the front and more about empowering teams while staying close enough to guide and support.
• Storytelling Accelerates Change: The Matter of Time documentary succeeded because it translated complex science and painful realities into emotionally resonant human stories.
• Innovation Needs Bold Business Models: Venture philanthropy demonstrates how nonprofit organizations can apply entrepreneurial thinking to dramatically accelerate impact.

Quote of the Show:

• “The best cowboy and the leader always stayed in the back of a cattle drive.”

Links:

• LinkedIn: https://www.linkedin.com/in/michaelhund/ 
• Website: https://www.ebresearch.org/ 
• Matter of Time Netflix Documentary: https://www.netflix.com/title/82184383