BGI Genomics ALS collaboration to develop KnowALS

In this video, we tell the extraordinary story of Cai Lei, a former tech executive diagnosed with ALS (amyotrophic lateral sclerosis)—a disease that gradually traps patients inside their own bodies. Using only an eye-tracking device, Cai now works over 10 hours a day, leading one of China’s most ambitious patient-driven movements in rare disease research. Instead of waiting for a cure, he’s building one. From creating China’s largest ALS patient data platform to accelerating hundreds of drug development pathways, Cai and thousands of patients are redefining what it means to fight a disease—turning data into action, and patients into pioneers. This is not just a story about ALS. It’s about urgency, resilience, and a new model of medicine where patients take the lead.