By Zhixin Wan

Cai Lei’s professional life has always been a smooth sail. As a renowned financial expert and the vice president of Chinese e–commerce behemoth JD.Com, he discussed his expertise with the Chinese premier and was in charge of the sprawling group’s business lines worth billions of dollars.

But things are quite different these days. In an interview with TechTechChina, Cai said he would spend hours and hours trying to persuade someone with a Ph.D into joining his startup team – until his mouth ran dry. This is only one of the countless drastic changes that have taken place in his life since he was diagnosed with ALS, or amyotrophic lateral sclerosis, in 2019.

The 44 –year–old executive has since devoted his wealth and energy, along with what is left of his life, to the research of the fatal disease, in the hope of finding a cure. If not for himself, at least for the millions of ALS patients around the world.

To Cure the Incurable

ALS, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. One of its most famous victims was British theoretical physicist and cosmologist Stephen Hawking, who succumbed to the disease in 2018 after living with it for more than half a century. Another recent victim was British roboticist Peter Scott–Morgan, referred to in some media reports as the “world’s first cyborg,” for he had undergone a series of operations and completed his transition into a robotic avatar. He died last month at the age of 64, five years after his diagnosis.

ALS remains a largely intractable motor neuron disease. Most people with ALS eventually lose the ability to walk, dress themselves, write, speak, swallow, and finally, the ability to breathe. It varies from person to person in terms of how fast and in what order these symptoms and progression occur. Patients’ life span is largely shortened, with an average survival period of three years. About 20 percent of people with ALS live five years, 10 percent survive 10 years and 5 percent live 20 years or longer, according to the ALS Association.

Several weeks after his diagnosis in 2019, Cai Lei set out to search for a cure to ALS. The first step was to become an expert on the disease, and, to a larger degree, neuroscience. For the past two years, Cai has read thousands of papers on ALS in scientific and medical journals. Now, he could talk on and on about medical concepts and terms he had never expected to learn – the protein folding problem, oxidative stress, antisense oligonucleotides ….

“It is safe to say that nobody else in the world can read as many as 31,000 papers about ALS,” Cai told TechTechChina in a video interview, noting that when people – even experts – read papers, they only skim for information that is useful to them and ignore the rest. But Cai is confident he will accomplish the impossible task, though he ached by just sitting up for the interview.

“I am the only person in the world determined to undertake the enterprise that’s impossible for everyone else,” said Cai. He plans for his whole research team to finish reading all approximately 500,000 pieces of academic papers in all related fields: neuroimmunity, Alzheimer’s, and Parkinson’s Disease, to name but a few.

Photo provided by Cai Lei.

Race Against Time

This extensive research has convinced Cai of the possibility to find a cure to ALS. While Cai’s team was accelerating the research on ALS medication, Cai volunteered to trial dozens of new medicines on himself.

Clinical trials and studies for a new medicine can take several years and sometimes longer than a decade. Cai said his team had shortened it to several months.

From Cai’s perspective, people living with ALS cannot wait. To them, death is certain.

“This is the world’s largest clinical experimental platform, and I am the perfect candidate to conduct the fastest trials on,” said Cai. “It is not against ethics to test on myself – it is not against the law even if I die from it – so I try on medicines like insane.” Cai said he had tried more than forty kinds of medicine on himself, more than half of which are yet to be approved.

He also founded an online platform called “Jianyuhuzhu,” which roughly translates as “mutual help between ALS and cure.” It is the largest online ALS community in China, with a mission to bridge the information gap between doctors, scientists, investors, and people with ALS.

With his resources as a high-flying tech executive and multi-millionaire, Cai was able to locate and connect with more than a hundred leading scientists in the field around the globe. Cai is now leading a team of around twenty people, who keep the online ALS platform running, and a team of seven scientists who work part–time on the research of ALS.

In June, Cai made headlines among major Chinese media outlets, including China Central Television, when he announced he would donate his remains for neuroscientific research after he dies. Cai called on other ALS patients around the nation to do the same.

As of the interview with TechTechChina on June 24, more than one thousand people had signed up for donation drive. Eighty percent of them were patients, and the rest were family members of those living with ALS, who signed up for their loved ones. According to Cai, this will become the world’s largest biological database of ALS patients.

In his mind, this is yet another impossible feat for anyone else to accomplish. And Cai is aware of his privileged circumstances.

“I have what it takes to call for public attention. I have resources, and a team who kept trying to persuade potential donors for over a month,” said Cai. He is proud of his achievements, saying he used only one month to finish the “impossible task.”

Musk–like Personality and Ambition

Elon Musk’s name came up from time to time during the interview. Cai looks up to Musk. Interestingly, the two entrepreneurs are similar in some way – both are progressive in what they do and are more or less controversial figures.

In a social media post back in April, Cai wrote, “Lately, there have been increasing media reportage of me leading the ALS fight by people suffering from it. Some people insulted me, and even wished me dead, after reading those articles. I am more than disappointed. I even wished for a quick death, for it seems that only my own death can shut them up.”

Cai is a big champion of the kind of entrepreneurship he and Musk are representing. He also cited his boss, Richard Liu Qiangdong, at JD.Com, and Jack Ma, founder of Alibaba, while challenging the authority of scientists.

“Do not trust any authoritative expert, for no expert has cured the disease. I am determined to overturn this,” said Cai, acknowledging that he’s arrogant.

“Elon Musk is not a scientist, but he has accomplished things that no scientist could have ever done. With Musk being my role model, I hope to achieve something that is still impossible to mankind,” Cai said.

Cai thinks tackling ALS is a task one hundred times as difficult as mankind landing on the moon. He cited China’s budget on the country’s first moon mission, which cost 1.4 billion yuan (~$209 million), adding that 600 billion dollars have been poured into the research of motor neuron diseases such as Parkinson’s disease and Alzheimer’s, yet there has been no significant breakthrough to date.

Cai adopted financial thinking when measuring the difficulty. “There’s no other industry that sees no yield at all after you invest that much money, except pharmaceutical research and development,” Cai said.

Pushing Boundaries or Repeating Failures?

Cai says he has raised 900 million yuan (~$134 million) for ALS research, but funding remains a big problem for the project. He admitted that the 200 fund-raising speeches he has given to date received mostly disappointing results.

“Almost all of them were total failures,” Cai said. He started his own Ice Bucket Challenge in China last year and raised only 100,000 yuan (~$15,000) in public donations, much less than his expectation – 100 million yuan (~$15 million). In 2014, the Ice Bucket Challenge started from the U.S. and swiftly swept across the globe on social media, ending up raising over 220 million dollars for the ALS Association. Participants included celebrities such as Justin Bieber and Taylor Swift.

Photo shows people doing Ice Bucket Challenge. Photo by Unsplash.

Cai had rarely experienced frustration like this in his professional life. Raising funds used to be the easiest thing for him. He never had to worry about funding for any project he steered. In his own words, investors would “beg” him to get a private equity share.

“The whole country raised only 100,000 RMB [for the Ice Bucket Challenge he initiated]. Was that my failure? I don’t think so.” Cai said. “I have tried. I helped to make progress. I think I am successful in that sense.”

Cai then quickly rebutted himself and said almost all his attempts were failures. Cai shared a story on his WeChat moments in March 2022: He had just interviewed a student with a doctorate degree in life science from Tsinghua University, China’s most prestigious university and research institution. The job description for a role in pharmaceutical research and development was, “A glorious, once–in–a–lifetime opportunity to work alongside ALS fighter Mr. Cai Lei, to battle against world’s most difficult disease, ALS. To rewrite history, to be in the hall of fame.”

During the interview, the applicant asked Cai what the job was about. Cai answered, “It’s fairly easy, with only one task: Assist me in the research of ALS and save lives. And when I fall down, please continue, and make ALS your calling.”

The new hire ended up leaving after only one week on the job, after telling human resources the blunt truth: He saw no hope in this endeavor. It’s unlikely to succeed.

Cai quoted the person’s parting words to human resources, “I can spend the next two years working for Cai. But when that fails, when Cai falls, I won’t be able to find a job. I still need to make a living,” he said.