‘Only death can stop me’: terminally ill Chinese tycoon works 12 hours daily to cure ALS

A former Chinese e-commerce executive in the final stages of a rare disease is still working 12-hour days, devoting what time he has left to accelerating the search for a cure.Cai Lei, 48, a former vice-president of JD.com, one of China’s largest e-commerce companies, has spent seven years battling amyotrophic lateral sclerosis (ALS), an incurable disease that progressively attacks motor neurons.His condition has recently deteriorated to an advanced stage. Unable to move or speak, Cai can now communicate and work only by using eye-tracking technology to type on a computer.His assistant told the mainland media outlet Yitiao that Cai has survived several near-death episodes, including one in which phlegm blocked his throat, leaving him unable to breathe for about a minute.Cai Lei, above, pictured attached to medical equipment in a hospital bed. Photo: YitiaoEven the smallest movements now require extraordinary support. Four carers are needed to help him rise from a chair or return to bed, while muscle atrophy causes him pain and numbness after sitting for long periods.But Cai continues to devote himself to ALS drug development, working nearly 12 hours a day. He has said only death will stop him.Cai is now Chairman of Beijing Aisikang Medical Technology and has reportedly donated more than 100 million yuan (US$15 million) to ALS research.He has also established four charitable funds dedicated to the disease and worked with leading scientists and doctors to set up several laboratories.Nearly two centuries after ALS was first identified, no drug yet halts its progression.Cai, above, sitting up as he works at his computer while a nurse takes notes. Photo: YitiaoCai’s team has built what is reported to be the world’s largest ALS research data platform, which it says has accelerated drug development by 20 times.Further ReadingCai is now advancing over 300 drug development programmes. One treatment targeting a single-gene mutation has helped save several fellow patients, but it cannot save Cai or most people with sporadic ALS.“In the darkest night, faith is the first thing that must not be shaken,” he told the media.Early this year, Cai announced RAG-17, a drug developed by his team, has achieved a clinical breakthrough, with several trial users reporting positive changes.One patient, He Jian, reportedly regained strength in his arm after the first injection, while two further doses helped stabilise his condition.Cai lies in bed, cared for by a nurse and a family member. Photo: YitiaoChina has about 200,000 ALS patients, many of whom require intensive medical support and care. But families seeking treatment are often vulnerable to fraud.To make care more transparent, Cai’s team has also developed an online mini-programme that connects patients directly with carers without charging agency fees.Cai and his wife, Duan Rui, a pharmacy graduate, have one son. Duan runs a social media account called “Breaking the Ice Station,” where she hosts live streams selling products to raise money for scientific research.Duan said helping Cai defeat ALS would mean more than simply having him return to family life.Cai, above, pictured before he was stricken by the rare disease that he is still battling. Photo: QQ.com“I still fear parting, but because of that, I cherish every second I spend with him,” she told the media.Cai’s extraordinary fight has struck a powerful chord on mainland social media.One online observer said: “ALS patients live with the agony of a mind trapped inside a failing body. Cai is a fighter. Human history is a hymn to courage.”Another wrote that miracles are never achieved by one person alone, but by the collective faith and responsibility of his wife, carers, researchers, media workers and supporters.