In this episode of The Association Insights Podcast, host OnWrd & UpWrd’s Meghan Henning sits down with Amy Leitman, JD, President of NTM Info & Research (NTMir) for a powerful conversation about advocacy, awareness, and what it takes for a small nonprofit to execute a truly global media campaign. 

Amy shares the deeply personal origin story that shaped her work in rare disease education and support—and how a patient-driven mission can scale into meaningful impact over time. The conversation also digs into the behind-the-scenes strategy of building a breakthrough, fully bilingual media campaign that earned an Association Insights CommImpact Award for Excellence in Media Relations.

🎧 If you work at an association or nonprofit with a small team, limited budget, and a big mission—this episode is packed with practical insight on how to scale impact without losing credibility or trust.

Key Highlights

From Personal Story to Global Mission: Amy explains how patient questions—not organizational assumptions—became the foundation of NTMir’s programs, resources, and research priorities, creating an organization built entirely around real-world needs.

Reaching the Audiences You’re Missing: By recognizing gaps in who they were reaching—especially Spanish-speaking patients—NTMir committed to a fully bilingual approach that went far beyond token translation, strengthening credibility and accessibility.

Building a High-Impact Media Strategy on a Small Budget: Amy breaks down how the organization identified the right media and marketing partners, leveraged retargeting and AI-supported tools, and focused spending where it would drive measurable awareness and discovery.

Why a Satellite Media Tour Still Works: The episode dives into how satellite media tours can deliver massive reach efficiently—when paired with the right spokespeople, expert preparation, and strategic market targeting.

Balancing Science with Human Storytelling: Amy shares how NTMir safeguards medical accuracy through rigorous expert review, while still centering the lived experiences of patients to create emotional resonance with broad audiences.

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Coming Soon We’re continuing the conversation with association professionals across sectors, sharing candid perspectives on top trends, emerging challenges, and the strategies leaders are using to move their organizations forward. Stay tuned.