JD's former Vice President Cai Lei suddenly announced that he is preparing for his future affairs! Diagnosed with ALS 4 years ago

Release time:Apr 15, 2024 14:40 PM

Today, the news of Cai Lei, former Vice President of JD.com and a protester against ALS, once again made it to the hot search on Weibo——

In a TV interview program, Cai Lei sincerely stated that he can fully accept death. In fact, he was already preparing for his retirement last year, including finding a successor, setting up a charity trust, setting up body donations, writing a book, and so on. "All of these preparations were made knowing that he was about to give up," he said

Cai Lei also posted screenshots of Weibo hot searches on his social media. He said, "Thank you for your continued concern. We will discuss and collaborate with a team of scientists from Harvard University, including two American academicians, at 10 a.m. to explore the possibility of accelerating the clinical translation of new neurodegenerative diseases such as ALS in China."

In the autumn of 2019, 41 year old Cai Lei was diagnosed with ALS. The incidence rate of this rare disease is about 1.6 per 100000. Today, with the rapid development of biomedical technology, the cure rate is still 0. The vast majority of patients will reach their end of life within 2-5 years. But Cai Lei was unwilling to accept this, as the former Vice President of JD.com was accustomed to challenges and risking his life. Two months later, he decided to use himself as a weapon to fight against ALS to the end.

His implementation path includes: building a database, seeking funding and scientist support, and promoting drug pipeline research and development; Providing support for tens of thousands of patients with ALS and firing the last bullet last year: uniting over 1000 patients to donate brain and spinal cord tissue for medical research; He also tried live streaming sales with his wife and wrote his autobiography "Believe", which became a best-selling book.

"Even if he is defeated, he will never give in." Nowadays, even though his body continues to deteriorate, Cai Lei's running still does not stop: he often works more than 16 hours a day, without rest throughout the year; He attempted to break the old rules of the game by directly linking funds, laboratories, pharmaceutical companies, patients, and hospitals, in order to shorten the time as much as possible.

Occasionally, Cai Lei also shows his fragile side. Last month, he recorded a small incident on his social media. His 4-year-old son heard from somewhere that he was about to die, and he couldn't help but yell at him. Seeing his son crying bitterly, he felt heartbroken. He knew that this was a burden his son should not have borne. Previously, his mother was also rapidly weakened due to his prolonged depression caused by ALS. He thought, when can humans conquer this disease that brings pain and despair?

Anyway, he is still running and eager to create miracles. He said, "I will fight until the last day, until the day I die."

Chao News reporters met with Cai Lei twice in September 2021 and April 2023, and recorded Cai Lei's story multiple times. We believe that this is not a tragic narrative of a terminally ill patient. Through Cai Lei's struggle, you will rethink the meaning of life and the pursuit of meaning.

The following is a manuscript previously published on April 25th of this year——

In the fifth year after being diagnosed with ALS, Cai Lei's voice began to blur and both hands became useless. He became increasingly aware that all efforts may be in vain.


JD's former Vice President Cai Lei suddenly announced that he is preparing for his future affairs! Diagnosed with ALS 4 years ago

From the 41st year of his life, Cai Lei was forced to fight against progressive frostbite - the incidence rate of this rare disease is about 4/100000. Today, with the rapid development of biomedical technology, the cure rate is still 0. The vast majority of patients will reach their end of life within 2-5 years.

Cai Lei is unwilling to accept this, as the former Vice President of JD.com is accustomed to challenges and risking his life. Two months later, he decided to use himself as a weapon to fight against ALS to the end.

This is his final battle: building a database, seeking funding and scientific support, promoting drug pipeline research and development, and providing support for tens of thousands of patients with ALS; He attempted live streaming sales, writing his autobiography, and fired the last bullet last year: uniting over 1000 patients to donate brain and spinal cord tissue for medical research.

This is not a tragic narrative of a terminally ill patient. Entering Cai Lei's life, you will find that although the outcome may be meaningless, the struggle itself is a kind of meaning.

This is Cai Lei's last entrepreneurship.

race

This is the first time this spring that Cai Lei has walked out of his home and office, taking a walk in the community. He looked down at his mother-in-law, and after several trial and error attempts, she finally closed the zipper of his thin down jacket and, as instructed by Cai Lei, put his soft palms into his pockets.

This is one of the largest residential projects in the urban area of Beijing, where Cai Lei and his family live. Starting from 2022, he rented a room on the ground floor and 9th floor of another building as an office area, live broadcast room, and a patient's bedroom. Walking between the office area and home, he sighed, it should have been so long ago. This snatched back some time from the fingers of Death.

In mid April, under the rare clear sunlight of spring in Beijing, the community gradually bloomed with elm leaves, plum blossoms, pear blossoms, and cherry blossoms, and the music of spring seemed to never end.

But Cai Lei only heard the alarm bell ring. Like a melting candle, his muscles were gradually engulfed by an indescribable force. Now, both of his hands are useless, and to drink water, someone needs to hold the cup to his mouth and use a straw to swallow it twice. In the middle of the night, his body was shaken awake by pain, and he couldn't move. He turned over into a luxury and said, "There's no more meat on his body, isn't it painful to press it down?"

He began to fall. This is one of the common ways for patients with ALS to die in the later stages: because their hands are weak, once they fall, their head will land first.


JD's former Vice President Cai Lei suddenly announced that he is preparing for his future affairs! Diagnosed with ALS 4 years ago

"Last year, there were seven or eight patients who died from falls." This spring, Cai Lei fell three times. Once there was no one around him, but fortunately he reacted quickly and used his shoulders to support the wall, which protected his head.

He is still racing against time, working non-stop all year round for more than 16 hours a day. On Chinese New Year's Eve, he reunited with his family for 3 hours before returning to the office to work overtime. The doctor shook his head and said, "Your work pace is unbearable for normal people."

It's just that his body is slowing down the process: by the end of 2022, he could still use his shoulder to shake his arm and drive the only movable right index finger to click on the mouse. Now, he can only control the mouse with his foot covering it; He added a microphone, but due to weak throat muscles, using speech recognition input can sometimes be converted into a series of English sentences by the system. "In the later stage, we can only use an eye tracking device," he said

Cai Lei races against time and works more than 16 hours a day.

In December last year, Cai Lei was attacked indiscriminately by COVID-19, because his phlegm nearly ended his life with a fever of 39.1 degrees, and he spent a day reading papers in the office. This became something that his wife Duan Rui would argue with whenever she remembered it. "Do you know that you are committing suicide by tinkering like this every day?" said Duan Rui.

After that, Cai Lei suffered from a long "sequela" of COVID-19: it lasted for two or three months. In the afternoon, he had to sleep for about an hour, which made him depressed.

"I always feel like I'm not fast enough, I'm not doing enough. Not to mention 16 hours a day, I can't even finish 20 hours a day because this goal is too heavy. What you're challenging is something that the world can't do." Cai Lei added, "My patients are dying every day, and I may also die in about a year."

revolt

Sometimes Cai Lei would remember a seemingly insignificant rebellion over a long river of time.

In the third grade of elementary school, one day after school, Cai Lei finished his duty and met two little thugs who were one head taller than him in the already dark sky. Perhaps seeing him alone, small in stature, the little thug suddenly slapped him on the back of the head.

Cai Lei instinctively took off his backpack and swung it over. After a brief moment of shock, the other party quickly retaliated. Until the shopkeeper separated them.


JD's former Vice President Cai Lei suddenly announced that he is preparing for his future affairs! Diagnosed with ALS 4 years ago

On the way back that day, he seemed to have won the world. He calculated that although he had eaten a few feet, the other party did not take advantage. Cai Lei would not have thought that his future life would be marked by resistance.

30 years later, Cai Lei is no longer a teenager, and time is his biggest opponent. When he was studying, he trained himself to submit his papers half the time in advance, appearing to easily achieve full marks. From a small town in Henan to a prestigious school in Beijing, from Samsung, Vanke to JD.com, he competes with himself, his competitors, and the trend of the times to seize time. A former business partner said that Cai Lei was lucky. "At every stage, he was able to choose the best industry and the best company. He sacrificed his life, and the times generously gave him rewards that matched his talent and efforts."

By the age of 40, Cai Lei had not started a family and lived like a "work machine", losing his hobbies and health. Instead, he simply ran away "recklessly" and "lost if he had to," he told people around him.

What once surrounded Cai Lei was elitism and business logic.

Until the age of 41, he welcomed the birth of his son and faced the biggest challenge of his life: after nearly a year of continuous jumping, he was diagnosed with ALS.

ALS, commonly known as ALS, is a motor neuron disease. This most well-known rare disease has an unknown brutality to ordinary people. Its cause is unknown, there is no medicine to cure it, and the patient feels like they are being sealed off by solid ice, eventually reaching the end of their life in respiratory failure.

Over the past four years, Cai Lei is unlikely to recall the gloomy days when he first fell ill: he began to suffer from insomnia, stopping in the long dark night to contemplate the first half of his life; In order not to drag down Duan Rui, who had been married for less than a year, he proposed a divorce, but Duan Rui refused; He searched for doctors and medicine, visited "masters" everywhere, and fell into a scam and despair.

But when he found that, because of the barriers between hospitals, even the most authoritative frostbite expert in China had fewer than 5000 patients in 30 years, his professional sense of smell and inertia told him that this would be an "entrepreneurial" opportunity: to provide doctors and scientific research institutions with sample cases by using big data and Internet tools that he was good at.

He first perked up and said, "If you want to challenge, challenge a big one!" Encountering a powerful opponent excited Cai Lei, and a thought gradually became clear: "There is no medicine in the world, so make it yourself!"

If time can still fight, can humans fight against laws?

In the past four years, Cai Lei has also blurred those failures and disappointments: he has conducted hundreds of roadshows, but after 10 months, he has not even found a penny; Initiated the Ice Bucket Challenge fundraising, processing 7000 to 8000 WeChat messages per day for two months, but donations from strangers in society were only over 100000 yuan; The core members left without saying goodbye, and most team members resigned after working for two months. They said, "It's too exhausting, there's no hope."


JD's former Vice President Cai Lei suddenly announced that he is preparing for his future affairs! Diagnosed with ALS 4 years ago

Cai Lei's defeat seems to have no suspense. There is a "double ten law" in the development of new drugs, which means that it takes an average of 10 years and 1 billion US dollars to develop a new drug. For both Cai Lei and other patients with ALS, 10 years have been too slow; And even though Cai Lei has been selling stocks, properties, and cars for 1 billion US dollars, it is still a drop in the bucket.

So over the years, Cai Lei pieced together puzzle pieces, "breaking old game rules and directly connecting funds, laboratories, pharmaceutical companies, patients, and hospitals to shorten the time as much as possible." Cai Lei said.

He placed four models of Sun Wukong in the office, scattered on the table and walls, either glaring or carefree. After suffering from ALS, he used Sun Wukong as his WeChat avatar and wanted to become the monkey that jumped out of the crevice of a stone, even after being oppressed by powerful forces for 500 years, still waiting for the earth to shatter.

The Sun Wukong Model in Cai Lei's Office

Patient

Sometimes, Cai Lei is also contradictory. He thought that saving his own life was destined to fail, but he firmly believed that overcoming illness could lead to success. "I'm not a romanticist, fighting a war without any reward," Cai Lei said.

A month ago, Yabuli China Entrepreneur Forum. Cai Lei stood on the wall of the patient photo in front of the big screen, talking about their stories of body donation, his voice choked up.

In China, there are currently nearly 100000 patients with ALS, and everyone can see the end of their lives.

The patient group initiated by Cai Lei has a total population of over 10000 people. Whenever a family member resells wheelchairs and second-hand ventilators in the group, it means another patient has passed away.

In the master bedroom next to Cai Lei's live broadcast room, there lives a patient named Xiao Jiang, who is the wife of Cai Lei's assistant Xiao Gao. She is 37 years old and used to be a doctor. The disease first engulfed her voice, making it difficult for her to express her pain.

Cai Lei said that a cruel aspect of ALS is that one will eventually watch oneself die while the brain is clear.


JD's former Vice President Cai Lei suddenly announced that he is preparing for his future affairs! Diagnosed with ALS 4 years ago

Last December, Xiaogao joined the company. Like Cai Lei, he works until 11 pm every day, taking time out to go upstairs and take care of his wife.

At 10:30 in the morning, Xiaogao cut the carrots and spinach into fine and fragmented particles, beat them with an egg, and avoided MSG and chicken essence - he believed that this was not conducive to his wife's condition.

Xiaogao and Xiaojiang's daughter is not yet 5 years old this year. Their big family consists of 8 people, and Xiaojiang's mother has been paralyzed and bedridden since she was 17 years old. The two pillars supporting this shaky home suddenly broke again.

For the past year, this couple has been thinking about ending themselves every day. Until Xiao Gao was inspired by Cai Lei's story, he thought he couldn't sit idly by. He bought a folding bicycle and planned to ride a bike from Tianjin at night to join Cai Lei's career in case of lockdown.

Xiaogao believes in the entrepreneurial spirit and has hopes for what Cai Lei has done. In the patient group, some people, like Xiao Gao, regard Cai Lei as a "shining person"; Sometimes, there are also doubts, attacks, and insults. Many people will forget that Cai Lei is also a patient, frequently asking him when the medicine will come out.

Cai Lei thought that he, along with this rare disease group, had the last bullet, which was his body.

If there are no real human pathological samples, the research on the etiology cannot be discussed. In the first half of 2022, Cai Lei was the first to sign an agreement and called on patients with ALS to sign and donate their bodies, especially brain and spinal cord tissues. He worked on the ideological work of his patients one by one, saying, "This is also a form of self rescue. Even if this generation cannot catch up, we can still bring hope to the next generation of patients."

More than 1000 patients ultimately responded to Cai Lei, including Xiao Jiang and "People's Hero" Zhang Dingyu. In July 2022, the first sample of brain and spinal cord tissue donated by a patient from Heilongjiang province was completed.

On the wall of that photo, many patients left smiling faces. Xiao Gao said that whenever he talked about his fellow patients, it was a rare moment of vulnerability for Cai Lei.

Cai Lei does not fully agree. This struggle was initially about "saving oneself and others". Just as he struggled with inertia and darkness, he saw vitality and wanted to take his patients through despair.

More than 1000 patients eventually responded to Cai Lei by donating his body and brain and spinal cord pathological tissue after his passing.


JD's former Vice President Cai Lei suddenly announced that he is preparing for his future affairs! Diagnosed with ALS 4 years ago

wife

Now, every Tuesday, Wednesday, 4th, and 6th, at 7pm, Duan Rui and Cai Lei start broadcasting on time.

Like being familiar with the reports, documents and audit reports, Duan Rui is now familiar with those Luosifen, sheep horn honey, raw eggs, old people's shoes... Seeing someone praise the received mangosteen, she frequently nods: "I am particularly satisfied with this selection."

On the evening of April 18th, the live broadcast was delayed by 7 minutes. The team just completed a move and didn't even have time to hang the curtains. When introducing a blueberry, someone mentioned "The Little Prince" in the comment section, and Duan Rui continued, "For the Little Prince, the reason why that rose is unique is because he accompanies it with his heart."

Cai Lei read out the audience's ID on the side, expressing welcome and gratitude. He said that all the people who came were "iron powder". Duan Rui peeled a bamboo for him, but he didn't have time to eat. He hurriedly bid farewell to the live broadcast room and left the venue for Duan Rui.

Live streaming sales is Duan Rui's second entrepreneurial venture. She casually talked about her academic background and joked, "Previously, there was a senior brother from Peking University selling pork, and now there is a junior sister from Peking University selling ginseng."

Duan Rui and Cai Lei are in the live broadcast room

In November 2022, Duan Rui joined Cai Lei's live streaming sales business full-time after seeing his live streaming room constantly losing money and months of back and forth struggles between the agency and the anchor's work.

Previously, she had her own accounting firm, which was her first time starting a business. She is sensitive and empathetic, and clients always feel that she understands them. She succeeded and the agency gained a good reputation, earning an annual income of several million.

The day before the live broadcast, she had just collapsed. Apart from her mother accusing her of not taking enough care of her son and the chaotic move, as well as the patient's family members giving her advice on using live streaming scripts and even spending money to purchase traffic, Cai Lei advised her, all for the sake of her own good. She retorted, "If I ask you every day if your medicine has been developed, what do you think?"

Duan Rui has a round face that loves to smile. She hates narrative of suffering and wants to maintain her independent identity, refusing to be seen by the media and friends as "Cai Lei's wife" or "the wife of a terminally ill patient".


JD's former Vice President Cai Lei suddenly announced that he is preparing for his future affairs! Diagnosed with ALS 4 years ago

When I was in college, I was a good friend and the two of them were always hurting each other. When my long lost friend found out about Cai Lei's illness, he sent her inspirational chicken soup. Duan Rui didn't know how to reply: Does the family of a terminally ill patient have to always live in a state of melancholy?

She met Cai Lei through a blind date, and the second time they met, Cai Lei proposed. The reason he gave was that he didn't have time for a romantic relationship. Since they felt suitable for each other, let's get married. "If you don't feel suitable, don't waste each other's time."

Duan Rui once doubted whether she had encountered a scammer, and then she smiled and said, "Okay" - she prefers intimate relationships that share the same interests and grow together. Until now, Cai Lei, who appears to need more care than her son under the age of 5, remains her support.

Duan Rui and Cai Lei

Maintaining the current live streaming sales business is something that Duan Rui wants to do with certainty. Walking through the storage area of the live broadcast room, between rows of unpacked express delivery cardboard boxes, Duan Rui pulled out a black sesame ball and said in a cheerful tone, "What do you think this tastes like?" Then he smiled and revealed the answer, "It doesn't look like Ferrero."

In the past two months, the project has turned losses into profits, which is a drop in the bucket for drug development, but at least it can afford to pay the salary of this team. This is what has given Duan Rui the most sense of achievement recently.

Puzzle flipper

In September 2021, Cai Lei and I met for the first time. For three or four days, we wandered through hospitals, forums, roadshows, and conversations were always in the car. Passing through the drowsy Beijing afternoon sunlight, we took the green train and smelled the breath of Beidaihe seawater getting closer and closer.

At that time, Cai Lei had a strong right hand, a quick mind, and clear and powerful speech. Seeing the square dance on the roadside, he joked, "My arms and legs are pretty good, and my muscles haven't shrunk."

That farewell, Cai Lei sat on the stone coffee table in the living room, propping his feet up to make himself more comfortable. The fluorescent lamp poured over his head. He suddenly mentioned that his grandfather only lived to be over 50 years old, and his father only lived to be over 40 years old. He was about to pass away at the age of 40, and he still had a hint of unwillingness.

And this time, Cai Lei said that he has fully accepted death: "Although I started accepting it three years ago, to be honest, there will still be regrets in my heart, but now, I can leave peacefully without any regrets."


JD's former Vice President Cai Lei suddenly announced that he is preparing for his future affairs! Diagnosed with ALS 4 years ago

Why? Cai Lei replied that he had already done everything that he should and could do.

Now, Duan Rui also feels that he has done his best and is prepared for the worst. She thought that if Cai Lei didn't work out one day, he would definitely live the longest among the patients. At that time, her third entrepreneurial experience was as a head nurse. "Perhaps by then, I finally have time to memorize Tang poetry and write, and there's nothing wrong with it," she said

Watching Cai Lei busy every day, sometimes Duan Rui would still get angry and say, "What you've done is meaningless, it's impossible to succeed!"

Duan Rui has a medical background and his own patent for drug invention. She switched careers from scientific research because she dislikes uncertainty and doesn't want to become a puzzle flipper. She explained, "From the perspective of history, it may take one or two generations to flip through ineffective puzzles. All your efforts may only determine whether your hand gestures are fast or stable when flipping through puzzles, but you cannot decide. The puzzle you flip through must be the one you want."

And now, fighting alongside Cai Lei, she feels like, "It's like there are 1000 pieces of jigsaw puzzle. You flipped through 30 pieces, even if unfortunately you didn't flip to the correct one, at least we flipped through 30 pieces for future generations. They don't need to flip anymore." After pausing for a moment, she said, "Yes, this is also a kind of push."

She compared her two palms and slowly approached, "The speed of research and development in the past may have been like this," then her index finger quickly jumped, "but Cai Lei's speed is like this."

Cai Lei's path to overcoming ALS, he attempted to complete the puzzle.

The common understanding of the team is that Cai Lei has increased the research speed of tackling ALS by 20-50 times. This means that the most optimistic estimate is that this was supposed to take 100 years, but now it has been successful in just two years.

Until 2022, Cai Lei promoted the donation of body and tissue samples, built the largest research sample library for amyotrophic lateral sclerosis pathology, established public welfare funds and charitable trusts, provided continuous funding for early research, and completed rapid clinical recruitment on an hourly basis.

At present, there are more than 70 drug research and development pipelines for ALS that have been promoted and tracked, with more than 30 clearly failing and more than 30 still under research, of which about 10 are already in or about to enter the clinical trial stage. It seems that Cai Lei is still flipping through the puzzle, and in the future, it will be the same.

"I will fight until the last day, until the day I die," Cai Lei said as he stopped and gazed at a cluster of crimson cherry blossoms above his head, as if he couldn't believe that spring was right in front of him.


JD's former Vice President Cai Lei suddenly announced that he is preparing for his future affairs! Diagnosed with ALS 4 years ago

The Publication of Cai Lei's Autobiography

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