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.TakeawaysPatient-led research can de-risk and accelerate drug development.$128K seed funding led to a $1B Novartis acquisition.CMTRF uses a venture-philanthropy model with milestone-based funding.Mission: fund treatments, find a cure, close the foundation.Storytelling drives awareness, donations, and partnerships.Early investments keep promising science alive.Biotech partnerships share risk and leverage expertise.Novartis validated CMT as a major market opportunity.Rare disease focus offers faster FDA pathways.Staying laser-focused means saying no to distractions.Chapters00:00 Intro & Guest Welcome01:20 From Grassroots Donations to Billion-Dollar Deals02:30 Understanding CMT and Its Impact05:00 Finding the Right Delivery Vehicle for Drugs07:40 The $128K Bet That Changed Everything09:50 Other Success Stories & Market Signaling13:00 The Venture-Philanthropy Model Explained16:30 The Power of Milestones and Flexibility18:45 Reinvestment and Sustainable Funding21:30 Role of Storytelling and Strategy in Movement Building26:10 Velocity Campaign & Raising $20M27:25 Why Biotechs Care About Rare Diseases31:50 CMT as a Gateway Indication for Neurodegenerative Disease33:30 Staying Focused and Saying No38:30 The Drug Development Lifecycle and Staying Mission-Aligned42:10 How to Get Involved and Follow CMTRF’s Work45:10 Personal & Business Advice for Leaders48:30 Favorite Books and Final Thoughts52:00 Closing Remarks and Call to ActionSusan Ruediger’s Social Media Links:https://www.linkedin.com/in/susan-ruediger/Laura MacNeill’s Social Media Links:https://www.linkedin.com/in/laura-macneill-m-b-a-97633732/CMT Research Foundation’s Website:https://cmtrf.org/Resources and Links:https://www.hireclout.comhttps://www.podcast.hireclout.comhttps://www.linkedin.com/in/hirefasthireright

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