Paralyzed but determined: Former JD.com executive Cai Lei works 12 hours a day to fight ALS

His battle with the progressive neurological disease that gradually destroys the body’s ability to control muscles began in 2018 while he was leading a major project at JD.com.

He initially dismissed a frequent muscle twitch in his left arm as a sign of overwork and fatigue.The discomfort gradually spread throughout his body, and eventually, he could not hold even chopsticks properly and his speech became slurred. Only then did he realize something was seriously wrong, according to the South China Morning Post.

Between August 2018 and September 2019, Cai visited more than 10 hospitals in Beijing for tests. While waiting for a diagnosis, he continued working, hoping it was merely a minor health issue. That hope ended when doctors confirmed he had ALS.

Cai has survived multiple life-threatening episodes caused by the progressive neurological disease. According to his assistant, he once nearly suffocated when phlegm blocked his airway, leaving him unable to breathe for a minute. He now requires four caregivers to help him get out of a chair or into bed. Prolonged sitting often leaves his body numb and in pain.

Rather than surrendering to the illness, Cai has devoted his fortune, energy, and nearly 12 hours of work each day over the past seven years to developing treatments for ALS. He founded Beijing-based medical technology company Aisikang and has donated more than 100 million yuan (US$15 million) to ALS research. He has also established four charitable foundations dedicated to ALS and collaborated with leading scientists and physicians to build research laboratories.

Cai Lei during hospitalization for ALS treatment. Photo from Xiaohongshu

Now 48, he can no longer move or speak, and communicates and works exclusively through eye-tracking technology that allows him to type on a computer. Nearly two centuries after ALS was first identified, no drug has been invented to stop its progression.

Cai’s team has built what is believed to be the world’s largest ALS research data platform, helping accelerate drug development by a factor of 20. He is currently overseeing more than 300 research and development projects. One treatment targeting a specific genetic mutation has already saved several patients, although it cannot help him or most people with sporadic ALS.

“In the darkest night, faith is the one thing that must never waver,” he says.

Earlier this year, he announced that RAG-17, a drug developed by his team, had achieved a clinical breakthrough. Several trial participants reported positive improvements. One patient, He Jian, said he regained strength in his arm after the first injection, while two additional doses helped stabilize his condition.

Cai Lei, now unable to move and relying on eye-tracking technology. Photo from Baidu

China has approximately 200,000 ALS patients, many of whom require extensive medical and caregiving. Families seeking treatment are often vulnerable to scams. To improve transparency in caregiving, Cai’s team developed an online platform that directly connects patients with caregivers without charging intermediary fees.

Cai had married Duan Rui, a pharmacy graduate, one year before he fell ill. The couple have a son. Duan runs a social media account called “Icebreaking Station,” where she hosts livestream sales events to raise funds for scientific research. She says helping her husband fight ALS carries a far greater meaning than simply bringing him back to family life.

“I still fear parting, but because of that, I cherish every second I spend with him.”

Cai’s determination has inspired millions of people across China, many of whom have followed his journey online.

As reported by Swamphis health continues to deteriorate and his breathing grows weaker by the day. He does not know whether he will live to see a cure for ALS, but his efforts have already helped many patients gain precious years of life.

One commenter wrote: “ALS patients endure the agony of having a clear mind trapped inside a body that is gradually failing. Cai is a warrior. The history of humanity is an ode to courage.”