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.
Takeaways
Patient-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.
Chapters
00:00 Intro & Guest Welcome
01:20 From Grassroots Donations to Billion-Dollar Deals
02:30 Understanding CMT and Its Impact
05:00 Finding the Right Delivery Vehicle for Drugs
07:40 The $128K Bet That Changed Everything
09:50 Other Success Stories & Market Signaling
13:00 The Venture-Philanthropy Model Explained
16:30 The Power of Milestones and Flexibility
18:45 Reinvestment and Sustainable Funding
21:30 Role of Storytelling and Strategy in Movement Building
26:10 Velocity Campaign & Raising $20M
27:25 Why Biotechs Care About Rare Diseases
31:50 CMT as a Gateway Indication for Neurodegenerative Disease
33:30 Staying Focused and Saying No
38:30 The Drug Development Lifecycle and Staying Mission-Aligned
42:10 How to Get Involved and Follow CMTRF’s Work
45:10 Personal & Business Advice for Leaders
48:30 Favorite Books and Final Thoughts
52:00 Closing Remarks and Call to Action
Susan 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:
Resources and Links:
Popular Podcasts
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Ruthie's Table 4
For more than 30 years The River Cafe in London, has been the home-from-home of artists, architects, designers, actors, collectors, writers, activists, and politicians. Michael Caine, Glenn Close, JJ Abrams, Steve McQueen, Victoria and David Beckham, and Lily Allen, are just some of the people who love to call The River Cafe home. On River Cafe Table 4, Rogers sits down with her customers—who have become friends—to talk about food memories. Table 4 explores how food impacts every aspect of our lives. “Foods is politics, food is cultural, food is how you express love, food is about your heritage, it defines who you and who you want to be,” says Rogers. Each week, Rogers invites her guest to reminisce about family suppers and first dates, what they cook, how they eat when performing, the restaurants they choose, and what food they seek when they need comfort. And to punctuate each episode of Table 4, guests such as Ralph Fiennes, Emily Blunt, and Alfonso Cuarón, read their favourite recipe from one of the best-selling River Cafe cookbooks. Table 4 itself, is situated near The River Cafe’s open kitchen, close to the bright pink wood-fired oven and next to the glossy yellow pass, where Ruthie oversees the restaurant. You are invited to take a seat at this intimate table and join the conversation. For more information, recipes, and ingredients, go to https://shoptherivercafe.co.uk/ Web: https://rivercafe.co.uk/ Instagram: www.instagram.com/therivercafelondon/ Facebook: https://en-gb.facebook.com/therivercafelondon/ For more podcasts from iHeartRadio, visit the iheartradio app, apple podcasts, or wherever you listen to your favorite shows. Learn more about your ad-choices at https://www.iheartpodcastnetwork.com
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com