They helped many "Cai Lei" realize their last wishes in life,
It also preserves the hope of solving the mystery to the future.
Author: Wang Qinyi, Feng Qunxing
"I still have one last 'bullet', which is my body." Cai Lei's thought came out of his heart, and he couldn't disappear anymore.
Five years ago, Cai Lei, then vice president of Jingdong Group, was diagnosed with ALS. He embarked on the road of fighting ALS and established a big data platform for ALS patients, linking more than 10,000 patients. In September 2022, he announced that he would donate brain and spinal cord tissue to medical research after his death.
Under his inspiration, in just a few months, more than 1,000 ALS patients signed a donation form for their bodies, brain tissue, and spinal cord tissue.
As of June 2024, 10 cases of brain tissue and spinal cord tissue donation have been completed nationwide, of which 3 cases are stored in the National Health and Disease Human Brain Tissue Resource Bank (hereinafter referred to as the National Brain Bank).
At the National Brain Bank Office in Hangzhou, Global People reporters met a team led by academicians. It was they who helped many "Cai Lei" realize their last wish to sacrifice "bullets", and also preserved the hope of solving the mystery to the future.
In 2023, Cai Lei (front row, second from left) paid tribute to the brain samples of donated volunteers at the National Brain Bank.
"The biggest difficulty is the willingness to donate"
In April 2022, an email came unexpectedly, signed by Cai Lei's assistant. The email said ALS patients would like to donate brain and spinal cord tissue, but it is unclear how difficult it is to store them. Duan Shumin immediately realized that this was a very important matter, and he immediately added the WeChat account that his assistant told him in the email, although it was the first time he had heard of Cai Lei.
The following is Duan Shumin's account.
I don't usually pay much attention to the news, but I only found out that there is such an influential public figure after reading the email. Mr. Cai Lei deserves respect, and he is a person who wants to solve the problem of ALS.
After further communication with him, I learned that his worries focused on three points:
First, some patients who are willing to donate are scattered all over the country, how to connect with the staff of the national brain bank?
Second, the brain is very easy to autolyze, and the brain sample must be obtained 24 hours after the donor's death at the latest.
Third, in addition to brain tissue, can spinal cord tissue be received?
This time, he came to me, and he first asked the China Organ Transplant Development Foundation to learn that China already has a national brain bank. This shows that our propaganda work is still not done well.
In fact, the difficulties they have in mind are not much of a problem in our eyes.
The brain bank is on standby 24 hours a day, 7 days a week. We also established the Chinese Brain Tissue Bank Collaboration Alliance, and at that time there were already 19 standardized brain bank sub-databases.
In June 2024, Duan Shumin was interviewed by Global People. (Lei Xun / photo)
You ask me, what is the difficulty in building a brain bank? I always say that the biggest difficulty is that there are not many people who are willing to donate.
In 2010, I came to Zhejiang University as the dean of the School of Medicine. In 2012, a teacher in the hospital suggested to me if we could build our own brain bank as Chinese. This advice is very important.
Since the 80s of the 20th century, developed countries such as the United States and Europe have successively established brain banks. At that time, there were also medical schools in China that were establishing brain banks, but almost none of them were really functioning. The research of Chinese scientists has relied heavily on imported samples of foreign brains.
I study neurobiology and know the significance of human brain samples for various neuropsychiatric disorders.
The human brain is 1,500 grams and has about 86 billion neurons. However, this most delicate and highest-level tissue in the human body is sick, but it cannot be biopsied like other parts, and can only be tested on animals. Many new drugs fail as soon as they enter clinical trials.
If the brain can be taken and studied in time after the donor's death, it will be possible to figure out what changes the disease has in the human brain.
After the establishment of the brain bank, no donations were received for a long time. We went to mobilize neurologists in some hospitals in Hangzhou, but it was not very effective. Because it is difficult for a doctor to ask a patient. Patients will misunderstand and resist: You haven't treated me yet, so you asked me for a brain?
It was only at the end of 2012 that we received our first donation. The patient had Huntington's disease and was mobilized by the doctor to sign a donation form. But then he withdrew it, and it was only later that he changed his mind because the children in the family were also ill. Because he realized that without donating, the "curse" of the whole family may never be broken.
Why am I willing to do such a job?
I was one of the first batch of college students after the resumption of the college entrance examination in 1977, and I wanted to make up for the lost time when I was very enthusiastic about learning.
At that time, the foundation and conditions of domestic scientific research were relatively weak, and I deeply felt the importance of scientific research platforms. When I have the ability to appeal, even if it only makes a small difference, I am happy to push it.
Another thing that prompted me to build a brain bank was when I was in college, my teacher took out a heart sample with hypertrophy of the heart muscle, which was donated by Professor Xie Xin, the first dean of the school's medical school.
I will always remember the shock. Now, I have naturally signed the "National Brain Bank Donor Informed Consent Form", hoping to donate my brain after my death.
The National Brain Bank logo, the blue lines like circuit boards are entangled and separated like brain neurons.
"Lucky enough to recognize heroes"
As Academician Duan said, the mouse brain is different from the human brain, and many experimental drugs are effective in mice, but they are completely wiped out when they enter the clinic.
Liu Huaqing knows that the study of human brain samples is the only way to break the bottleneck. Talking about ALS brain tissue and spinal cord tissue donation volunteers, she has deep respect: "They are all heroes, and I am fortunate to know them. ”
The following is Liu Huaqing's account.
Have you seen the "Silent Teacher Monument" outside?
"Silent Mentors" is the honorific name given to body donation volunteers by faculty and students of the School of Medicine—they teach us valuable medical knowledge even though they don't speak.
The names on the tablet are updated every six months, and there are already three ALS patients I know whose names are on it, among them, Mr. Guo is the first donor of brain tissue and spinal cord tissue in Zhejiang Province.
Mr. Guo's home is in a mountain village in Xianju County, Taizhou City, Zhejiang Province. We drove from Hangzhou, and it took another 1 hour to drive the mountain road to get there.
When I entered the courtyard, I saw two bungalows, one was a hall for receiving guests and dining, and the other was a bedroom, each room was more than ten square meters.
Compared to the bright spring light outside, the light inside the house is a little dim. Part of the wall skin has peeled off, revealing the adobe bricks inside.
Because of the progression of the disease, Mr. Guo spoke a little slurred, but he was more talkative and beckoned us to eat this and eat that. Mr. Guo's wife is soft and quiet, and has been busy by the earthen stove.
Mr. Guo originally worked as a technician in the road construction team, but soon after the onset of illness in 2018, he lost his ability to work and had to return home.
As his condition progressed, he "couldn't even lift his pants" and couldn't cook. His wife, who was working in Hangzhou, came back to take care of him, and both husband and wife lost their source of income. "We used to save a little bit of money." The wife whispered. This type of poverty is common in the families of ALS.
We later went to his house to shoot a documentary, and his wife was wearing a bright orange and yellow uniform, which Mr. Guo proudly said was his old work clothes. Because it was light and waterproof, he gave it to his wife so that she could go up the mountain to work.
Mr. Guo and his wife were at home, and the orange uniform worn by his wife was Mr. Guo's previous work clothes.
Xianju is the famous hometown of bayberry in Zhejiang, and Mr. Guo's family also has bayberry trees. It was the season when the bayberry was ripe, and Mr. Guo insisted on asking his wife to pick up a basket for us.
Regarding donations, his thoughts are very simple, and he takes it for granted: "Anyway, it will be burned in the end, and it will be burned at all, and it will be worthless, what a pity!" ”
About half a year after this visit, I received the news of his death in the early hours of the morning. It stands to reason that his disease is only in the middle stage, and I didn't expect him to go so fast......
Three days after his death, I finally got in touch with his daughter, Xiao Guo.
She cried and told me: "In the end, we borrowed money from relatives to buy Dad's medicine, but Dad left before he finished taking the medicine, and I felt bad when I saw the remaining medicine bottles." ”
That's when I realized how financially difficult the hero was at the end of his life – he never mentioned the financial difficulties during our two visits.
In 2023, Liu Huaqing (left) and volunteers visited the patient's home and reviewed the patient's medical record with his consent.
In the 80s of the 20th century, the American scientist David Snowden began to brew the famous "nun study", with the aim of studying the relationship between aging and Alzheimer's disease.
Sister Carmen of the convent was willing to mobilize people to participate in the project, but she also warned David Snowden not to treat the nuns as mere subjects: "I want you to really know them...... Whatever you do, I want you to remember who these people are. They are real people, people we love......" Eventually, 678 nuns joined the study and donated their brains after their deaths.
Sister Carmen's reminder was also a strong feeling I felt after contacting ALS donors.
They are living people and families who have been strong in the midst of suffering. They come from different places, have different cultural levels and family backgrounds, but because of their empathy for patients and trust in scientific research, they all choose to give back to the world by dedicating themselves after experiencing the cruelty of the disease.
They are so ordinary, unpretentious, tenacious, and great!
"The brain bank works like a bank"
The temperature in the refrigerator is as low as minus 80 degrees Celsius, and it must be opened with special gloves.
Bao Aimin carefully opened the door on one of the floors, and 20 small boxes were arranged in a grid, each containing "fresh" frozen samples from different brain regions. The donation time, the number of brains, and the brain regions are clearly marked on the box. 24 large refrigerators, which can store more than 600 cases of brain tissue.
"But the brain bank must not be for the sake of storing brains, the ultimate goal is to send it out, and I am not proud of how much I have saved." Bao Aimin is proud that the National Brain Bank has provided more than 9,000 research samples to more than 90 scientific research projects in China.
The following is Bao Aimin's account.
Our core work is divided into three core links: collection, storage and delivery.
The first is to collect posthumous human brain tissue. Every time a college student visits the National Brain Bank, he will say, "Teacher Bao, I want to donate too!" ”
I said, "You have to go home and talk to your parents."
All donors are required to sign the "National Brain Bank Donor Informed Consent Form", which is not only in line with international ethical norms, but also has some more intimate design.
For example, if at some point in the future the donor or family member changes their mind, their registration information and informed consent can be revoked without giving reasons; In addition to the donor's prior notice, the donor's informed consent form must also be signed by a close family member or guardian.
When the donor passes away, our staff will take out the brain as soon as possible, repair the appearance of the remains, and then return the body to the funeral home or home, without affecting the farewell of the body at all.
In the filing cabinet of the National Brain Bank, small boxes of paraffin tissue blocks are neatly arranged. (Lei Xun / photo)
In order to meet the different scientific goals of scientists, the removed brain is usually stored in two halves. Every step in the process is important, and we have to guarantee the final quality of the sample so that we can live up to the trust. Like a room with a refrigerator, it is powered by two circuits, which can ensure that one circuit is powered by another circuit immediately after a power failure.
In addition, we must do a good "final diagnosis". Without a final diagnosis, everything else is in vain.
For example, if a scientist wants to study a patient with depression, and it turns out that a patient with Alzheimer's disease is clinically misdiagnosed as depressed, if we send a brain sample to the scientist based on a prenatal diagnosis, the result is likely to be wrong.
Therefore, a professional pathologist, like a detective, is needed to restore the accurate "crime scene" of human brain diseases according to stained sections.
In 2023, Bao Aimin will be in the National Brain Bank Office.
Some people also asked me: My brain is very healthy, is it useless to donate? No. The human brain samples we send to scientists are case-control samples, a well-established brain bank, and the number of healthy brains should be at least 4-5 times that of diseased brains.
The brain bank operates like a bank. When the donor dies, the brain is deposited in the bank, and the brain is their precious legacy.
What is the final interest generated by the scientist who asks for a brain sample from the brain bank? It is the understanding of disease, the method of treatment, and the hope of new drugs and mankind.
Now, because of the work of the national brain bank, my research time has been squeezed a lot, but I don't regret it at all.
On the contrary, I think this is my best working state, after all, if you do it alone, how far can you go? The development of science requires the efforts of one generation or even several generations.