In this episode of The Tech Leader's Playbook, Avetis Antaplyan sits down with Susan Ruediger, Founder and Chief Mission Officer of the CMT Research Foundation (CMTRF), and Laura MacNeill, the organization’s CEO. Together, they explore how patient-led research is revolutionizing drug development and catalyzing billion-dollar outcomes. Susan shares the remarkable story of CMTRF’s $128,000 seed investment in DTX Pharma that led to a $1 billion Novartis acquisition — a masterclass in strategic risk-taking and venture philanthropy. Laura explains how CMTRF’s unique “go-out-of-business” mission drives urgency, focus, and impact, while also inspiring other nonprofits to adopt similar models. The conversation dives deep into storytelling’s role in galvanizing donors, the importance of milestones and reinvestment, and how rare disease foundations can unlock breakthroughs for broader neurodegenerative diseases like ALS, Parkinson’s, and Alzheimer’s. Whether you’re a biotech leader, investor, or nonprofit executive, this episode offers actionable lessons on focus, partnerships, and creating outsized impact with limited resources.

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