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Director/Editor Photography Hou Editor Chen Xiaoshu
▲ After the diagnosis of the frozen man, Cai Lei experienced a dark moment in his life, but he persisted. Video production of onion skin
Since the adjustment of the epidemic prevention and control policy of new coronary pneumonia, the medical system in many cities across the country has been hit, and many patients with basic diseases are worried about liberalization. As patients with gradual freezing, they are completely disabled and need 24-hour care from their families, and they are at greater risk.
As a former vice president of an Internet company, Cai Lei has been using his own funds and contacts to promote the drug research and development of the frozen people since he was diagnosed as a frozen person three years ago.
Recently, he and his team have infected COVID-19. During the "Yang Liao" period, Cai Lei had a fever and almost lost his life because of phlegm. Even so, he kept working every day, with a high fever of 39. 1℃. It seems that what worries him is not Yang, but how to lead the team forward after Yang.
Extended reading
Cai Lei, vice president of JD.COM, delivered the goods on the spot: under the torture of gradually frozen human disease, he gave everything and set up a team to develop new drugs.
Recently, a live show with goods has attracted widespread attention.
On September 2 1 day, Cai Lei, vice president of JD.COM, released a video on social media platform, saying that he had officially started to do video and live broadcast. That night, he made his debut in the live broadcast room of Tik Tok. More than 7000 people visited the studio, and nearly 15% of them placed orders.
This is not the story of middle-aged entrepreneurs starting again in the live broadcast room, but the last venture and battle of a terminally ill patient. Because Cai Lei has another identity-a patient with gradual freezing. At the same time, it is also the promoter of the research and development of drugs for rare diseases.
Cai Lei announced that it would be broadcast live.
Many inventions of drugs for rare diseases in the world are promoted by patients or patient communities. In addition, it takes an average of 10 years and 10 billion yuan to develop a new drug. In addition to Cai Lei, there are about 200,000 patients with gradual freezing in China.
Cai Lei said that since he was ill for more than two years, Cai Lei has been unable to pick up his mobile phone to process information, lost his typing ability, and the muscles around his legs and neck began to atrophy.
He hopes to bring some good and cheap goods and services to consumers through live broadcast, and at the same time earn some money to continue to support the cause of overcoming gradual freezing.
Cai Lei started live broadcast with goods: I just want to make some money and continue to overcome the gradual freezing.
At 8: 00 p.m. on September 2 1 Sunday, Cai Lei and Zhu Bo launched their first live broadcast with goods in the new account "Ice-breaking Station". The afternoon after the live broadcast, Cai Lei reported her first performance through social media.
Cai Lei brought the goods in the studio.
It is reported that the two-hour live broadcast sold a total of 79,669.66 yuan of goods, and a total of 7,259 viewers entered the live broadcast room, of which 14.4% of users placed orders for shopping, most of which came from the support of friends and patients.
Judging from the choices presented in the window, most of them are daily necessities, and the prices range from 9.9- 139 yuan. Cai Lei stressed that he couldn't get the best price because there was no sale before. Although the price is not necessarily the cheapest, the quality is strictly controlled by the Cai Lei team.
Cai Lei, please don't reward.
In addition, Cai Lei has repeatedly said in interviews and short video works, please don't reward or buy things you don't need. "It seems how miserable we are. Please help us. It's not necessary. I think I can still fight for it and use our ability and resources to do public welfare. This is a great cause in my heart. "
As of press time, there were only 23 fan accounts "Icebreaking Station" when it was launched, and it has grown to 1.7 million fans in three days. At eight o'clock tonight, the "ice-breaking station" started the second live broadcast with goods.
Cai Lei brought the goods in the studio.
China "the first person of electronic invoice"
Challenge "gradually frozen people"
Based on the China Foundation and the platform of Blue Whale financial reporters, most people can't imagine that the man in the video who even struggled to hold glasses was once a man of many industries.
At the age of 44, Cai Lei's life is divided into two parts: before the age of 4 1, he was the vice president of JD.COM Group and "the first electronic invoice in China"; After 4 1 year-old, he is a fighter of gradual freezing disease and a pioneer of new drugs.
According to public information, Cai Lei was admitted to the Central University of Finance and Economics from Shangqiu, a small town in Henan Province, and entered many famous enterprises after graduation. Cai Lei, 25, is the tax manager of Samsung's headquarters in China. At the age of 29, he became the chief tax accountant of Vanke Group; After accumulating enough work experience and qualifications, he joined JD.COM at the age of 33 to help the company go public.
During his ten years in JD.COM, Cai Lei was one of the most senior executives. He is mainly responsible for taxes and funds. June 20 13 helped JD.COM design the first electronic invoice in China, which became the first electronic invoice in China.
Cai Lei was named as one of the top ten outstanding tax figures in China in 20 14, and one of the top ten accounting figures in China in 20 17, and was selected as a contributor to China's reform in the 40th anniversary of reform and opening up.
With the listing of JD.COM, the stock price keeps rising, and Cai Lei's net worth has exceeded 100 million. However, just when he reached another peak in his life, the "frozen man" put an end to all this.
From 2065438 to September 2009, Cai Lei was diagnosed as a frozen person.
According to Time Finance, it starts with the left hand, then spreads to the whole arm, shoulder, neck and back, and even the leg muscles continue to contract at a speed visible to the naked eye. To make matters worse, his face began to beat. This means that without adequate intervention, Cai Lei may lose the ability to walk within one year, and then he will soon lose the ability to speak, swallow or even breathe.
Data show that the full name of this disease is ALS, which is a neurodegenerative disease similar to Alzheimer's disease and Parkinson's disease. When all motor cells are necrotic, the nerves and muscles they control will atrophy, resulting in people unable to move, breathe, chew and swallow.
At the same time, gradual freezing is also called the five terminal diseases of human beings together with cancer, leukemia, rheumatoid disease and AIDS. At present, unexplained diseases cannot be cured, and patients usually die of respiratory failure within 2 to 5 years after onset. About 80% patients will die within 5 years after onset. Zhang, president of Wuhan Jinyintan Hospital, and Stephen Hawking, a famous British physicist, are patients with gradual freezing. Worldwide, 4 ~ 5 people out of every 654.38+10,000 people suffer from gradual freezing; It is estimated that there are 200,000 to 300,000 people suffering from gradual freezing in China.
After the diagnosis of 20 19, Cai Lei began to devote itself to the research and development of drugs for gradually freezing people. I feel that time is pressing, and every day in Cai Lei is a race against life.
Data screen
In the past three years, what he has done is to link laboratories, pharmaceutical companies, hospitals and patients, and the basis for completing all this is funds.
According to Time Finance, at present, the team size in Cai Lei is more than 30 people, among which R&D personnel exceed 10, and the annual salary of the team exceeds 10 million. However, the GMP preparation and preclinical experiment of a gene drug will cost about 50 million yuan, which is unimaginable after entering the clinical trial stage. The probability of R&D failure is extremely high, and the return is impossible to talk about.
Before the onset, money was just a number for Cai Lei. "I can't spend it all, and there is nothing to worry about in this life." But now, money has become the number one problem in front of him. Years of hard work and consumption did not let him see the definite hope, but fell into a situation of running out of ammunition and food.
For this "last cause", Cai Lei has invested tens of millions of dollars. He even hung up his house and sold very little stock. But this is not enough. To do this, billions of dollars are needed. Live broadcast with goods is his choice after repeated fund-raising and careful consideration.
Since his savings can't support this business, Cai Lei thought of financing. At first, he thought that through his accumulated contacts for many years, "it should not be difficult to finance 1 100 million first".
In the case of financing difficulties, Cai Lei shifted more energy to the cause of public welfare funds. At present, he has initiated and co-sponsored four public welfare funds about the gradually frozen people, including a charitable trust to overcome the gradually frozen people.
Cai Lei: Facing death.
Blow out the last bullet
In addition to funding, Cai Lei has also established a patient database. Patient information data is an important basis for clinical research. To this end, he established Eskon and the "Healing Home". By May of this year, more than 1 10,000 patients had been linked, making it the world's largest private data platform for "frozen people".
This platform is tantamount to letting scientific research catch the express train and greatly speed up.
Information sharing enables hospital scientific research and patients to seek medical treatment, avoids repeated trial and error, and shortens the whole drug research and development process from 15 to 5 years.
Facing the problem of insufficient pathological samples, according to Health Times, in early 2022, Cai Lei began to promote the plan of brain and spinal cord tissue. He called on patients all over the country to take the lead in donating remains and tissue samples, contributing to scientific research and leaving hope for the next generation of patients. At present, more than a thousand patients with gradual freezing and their families have responded positively. Among them, Zhang, deputy director of Hubei Provincial Health and Health Commission and former president of Wuhan Jinyintan Hospital, who was awarded the honorary title of "People's Hero", is also one of them.
National database of human brain tissue development and function. Image source: Respondents of Health Times
On September 9, Zhang, deputy director of Hubei Provincial Health and Wellness Committee and former president of Wuhan Jinyintan Hospital, decided to donate the remains for the study of gradual freezing disease.
Meet Zhang.
Just a few days ago, on September 5th, the seventh "China Charity Day" was announced. According to Time Finance and Cai Lei, it was decided to donate the remains. "Because the world has not been able to overcome the gradual freezing, there is no specific medicine, and it is even more difficult to find the cause. I want to hit my last bullet-donate my body! "
Cai Lei took the lead in donating money and called on patients to donate their bodies. Under his mobilization, nearly a thousand patients with gradual freezing joined this feat. Image source: Respondents provide Time Finance
Cai Lei once said that he hoped to save 500,000 people before he fell. But from the recent CCTV news interview, we can see that Cai Lei has basically lost the ability to take care of himself.
In February and March of 202 1, Cai Lei's right hand was still moving. In June this year, only 1 finger can be lifted.
Video screenshot
At first, he could barely eat with one hand. Now he needs help to undress, drink water and eat. His hands will fall when he sleeps, and he will be in a wheelchair in six months.
Video screenshot
There is a sentence in the introduction of China Academy of Medical Sciences Peking Union Medical College remains voluntary donation station and national development and functional brain tissue resource bank: "The initial birth is as necessary as the final death; The first dawn, like the last sunset, will shine on the world. "
National Business Daily is integrated from CCTV News, Blue Whale Financial Journalist Work Platform, Health Times, Time Finance and China Fund.