In a quiet Beijing apartment, Duan Rui adjusts her husband Cai Lei's breathing tube before settling into her second full-time job: revolutionizing ALS research. What began as a personal battle against the neurodegenerative disease has evolved into China's most comprehensive patient-driven research initiative, challenging long-standing perceptions about ALS treatment and care.
The former tech power couple, now medical pioneers, have built the world's largest ALS patient data platform containing detailed profiles of over 10,000 cases. Their work has accelerated 42 drug candidates into clinical trials – a staggering number for a condition often deemed commercially unviable by pharmaceutical companies.
"This isn't about extending life by months," Duan told CGTN's Wang Qianhui during their interview. "We're rewriting the entire narrative of what's possible." Her decision to leave a lucrative tech career now fuels cross-sector collaborations between hospitals, AI researchers, and international neurology experts.
Their model demonstrates how patient-led initiatives can drive medical innovation. Recent breakthroughs include machine learning algorithms predicting disease progression patterns and a novel drug delivery system currently in Phase II trials. For China's 200,000 ALS patients and their families, these developments represent more than scientific progress – they embody a radical new approach to healthcare advocacy.
