Cai Lei types to the world with his eyes. Now unable to speak or turn his head, and having lost his swallowing reflex, the 6-year veteran in the fight against amyotrophic lateral sclerosis (ALS) spends more than ten hours a day plugged into an eye‑tracking computer, leading collaborations, reviewing data and coaxing a research movement forward even as his body collapses.
Diagnosed six years ago, Cai entered what he and doctors call the disease’s terminal stage in January 2026. His ALSFRS‑R score — a common functional scale that runs to 48 — has fallen into the single digits, a measurement that signals near‑total loss of voluntary motor function. Unlike a vegetative patient, however, Cai remains fully conscious, trapped in a failing body and obliged to watch his faculties ebb away.
The practical consequences are severe. He requires round‑the‑clock care, four people to transfer him safely, and carefully filtered liquid nutrition administered by syringe; a single throat irritation could lead to life‑threatening aspiration. Yet his days are still packed with virtual meetings, research coordination and patient outreach, facilitated by assistive technology and held together by an embedded support team that manages environmental controls down to the half‑degree.
Cai is not merely a patient; he is a convener. Over the past year his group engaged more than 60 international research teams, dozens of biotech companies and hospitals, advancing nearly 100 collaborative projects and nudging around 15 drug candidates or technologies into clinical testing. He built a patient registry with roughly 18,000 enrollees and established a data platform called “Gradual Recovery Mutual Aid House,” positioning himself as the bridge between affected families, clinicians and industry.
One of Cai’s most consequential moves is mobilizing tissue donation. He became the first ALS patient in China to sign a body‑donation agreement explicitly for research and has persuaded more than 1,000 patients and relatives to commit to similar contributions. Until recently China had virtually no collection of post‑mortem ALS samples; such tissue is indispensable for histological and molecular studies that live biopsies cannot supply.
Cai also sees a personal technological backstop in brain‑computer interfaces (BCIs). He and his team are weighing invasive versus non‑invasive options, aware that current high‑performance BCIs typically require cranial implantation and entail surgical risks. For now he prefers conservative approaches, but he has said he would accept implantation if other communication channels fail, because keeping his voice alive matters not only for him but for the thousands of patients who look to him as a symbol.
His appeals are at once scientific and moral. Cai hopes another ALS patient will “take the baton,” believing that someone acutely aware of the disease’s urgency will marshal the courage and credibility to sustain long, uncertain trials. The ask underscores a structural vulnerability in patient‑led campaigns: momentum often concentrates around a single charismatic founder whose illness may curtail the very continuity the movement needs.
Cai’s story has also had unexpected social reverberations. His book and public persona have inspired people in prison and ordinary citizens alike; handwritten letters and small gifts have arrived from strangers who say his message of “believe” helped them endure hardship. He signs off messages with a quote he admires — “Always stay optimistic, even if you are wrong” — a that combination of defiance and pragmatism that has come to define his public voice.
The human drama is immediate, but the broader consequence is institutional. Tissue donations, a robust patient registry and cross‑border scientific networks are building the raw materials for translational research in China that were previously sparse. If these moves accelerate discovery, they will reshape the country’s ALS research infrastructure; if not, they will still leave a durable civic template for patient-driven science that could be repurposed for other diseases.
Cai knows he may not live to see a cure. He has tested scores of interventions personally and accepts that many of the trials and pipelines he helped start are unlikely to save him. Yet he presses on because any success will matter to future patients, and because institutionalizing sample collection, data sharing and patient engagement raises the baseline for what Chinese neuromuscular research can achieve.
His situation also sharpens policy questions. Regulators, funders and hospitals face tradeoffs between encouraging experimental therapies and ensuring patient safety; ethical frameworks for post‑mortem donation, consent and data governance will be tested as tissue and digital registries expand. How China navigates these issues will determine whether Cai’s last, fierce campaign yields scientific dividends or remains an emblem of individual courage without systemic follow‑through.