Ex China e-commerce tycoon Cai Lei with deadly brain disease wows to save a million sufferers before he dies

Despite his deteriorating condition, Cai continues to burn the midnight oil in search of a cure. Photo: Baidu

• Multimillionaire, 46, diagnosed with rare condition, affects brain, spinal cord, pours resources into research, leads team set to announce new findings

A former e-commerce tycoon in China who was struck down with a fatal disease is devoting the rest of his life to supporting research and hopes to save one million patients before he dies.

Cai Lei, 46, who was born in Henan province in central China, is the ex-vice president of Jingdong, one of the country's biggest e-commerce companies.

In September 2019, he was diagnosed with Amyotrophic Lateral Sclerosis, or ALS, a rare neurodegenerative disease that affects the nerve cells in the brain and spinal cord.

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ALS is a type of motor neurone disease (MND) that severely impacts mobility, breathing, communication, and mental well-being, with symptoms that gradually get worse over time and are irreversible.

At present, there is no cure.

After the diagnosis, Cai decided to do all he could to support ALS research and fight the disease, according to China Entrepreneur Magazine.

"My only goal is to help the medical community conquer ALS as quickly as possible," Cai said.

To enable timely information sharing among ALS patients, he led a team that has established a medical data platform.

In autumn 2022, Cai and his wife hosted live-streaming sales on Douyin to fund ALS drug research. His account has 4.8 million followers.

On January 27 this year, he announced that he would donate 100 million yuan (US$14 million) to support ALS research. He also reportedly sold some of his properties and cars.

Cai said he knows he has little time left and may not live to see the new ALS drug come on the market.

"There are about 10 million patients with major neurodegenerative diseases, such as MND. I want to save one-tenth of them, which is one million people, before I die," he said.

Cai's health has deteriorated in the four years since his diagnosis.

In 2022, he could move his right hand and arm independently, but within months, he needed help for basic tasks.

By April this year, his limbs were almost immobile, his spine was distorted, and his tongue and lower lip became atrophied.

Despite his condition and the limitations it foists in him, Cai still works until midnight every day, attending online conferences for ALS drug research projects, according to China Entrepreneur Magazine.

In May, his condition dramatically worsened due to a cold, and he was admitted to the intensive care unit (ICU) for treatment.

Some people online claimed he was faking his illness to gain sympathy and traffic.

On May 28, Cai's friend, Yin Ye, the vice-chairman of the board for the genomics service provider BGI Genomics, wrote on Weibo: "I could never have imagined that someone would spread rumours and defame Cai Lei in his situation."

Yin posted a photo of his friend lying in a hospital bed and a screenshot of his WeChat.

Cai wrote that after leaving the ICU, he could not wait to discuss new research findings with Yin and did not want to waste his valuable time engaging with people who spread rumours.

Yin said BGI Genomics will announce new findings on ALS muscle biopsy technology in June.

"Cai is truly selfless and admirable for supporting ALS research to benefit others despite his unfortunate circumstances," one online observer wrote on Weibo.

"Although he is impressive, shouldn't he spend more of his remaining time with his family?" asked another.

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This article originally appeared on the South China Morning Post (www.scmp.com), the leading news media reporting on China and Asia.

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