She’s the mom of a child with a rare condition, and she wouldn’t take “no” for an answer from doctors. He walked 500 miles for his granddaughter, who has the same condition. Together, they’re helping a foundation develop a gene therapy treatment faster and cheaper than the big pharma giants.
Today, we speak with Nicole Johnson, founder of the FOXG1 Research Foundation, and Tom Horton, former CEO of American Airlines. Together, they are proving that a lean, parent-led organization can achieve breakthroughs usually reserved for billion-dollar pharmaceutical giants.
In this episode, we discuss:
The Startup Model for Science: How Nicole and Tom applied "lean startup" principles to fund a lab and launch a clinical trial.
500 Miles for a Cure: Tom Horton shares the lessons learned from his 500-mile walk carrying the names and prayers of children who cannot walk themselves.
Defying the Odds: An update on Josie, the beautiful 14-year-old who inspired the movement.
A Blueprint for Others: Why this breakthrough provides hope for thousands of other rare diseases left on the shelf.
Chapters & Timed Links:
[04:22] The Diagnosis: Nicole recounts the moment she was told "there's nothing you can do" and why she refused to believe it.
[10:15] Building the Lab: How the FOXG1 Research Foundation created a new model for gene therapy at a fraction of the usual cost.
[18:40] The 500-Mile Journey: Tom Horton discusses his walk and the "Gianna effect" that drives his fundraising.
[25:55] The Science of Hope: Why FOXG1 research holds the key to treating conditions like Autism and Alzheimer's.
[33:10] Staring Down the Impossible: Nicole’s advice for anyone told that their goal is unreachable.
My Sincere Thanks
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