Former JD.com Executive Cai Lei: Experts Say I've Advanced ALS Drug Development by at Least a Decade

In late September 2019, Cai Lei, Vice President of JD.com, was diagnosed with amyotrophic lateral sclerosis (ALS).

At the time of diagnosis, his child was only a few months old. He wondered that if he were to pass away, whether his child would have any memories before the age of three, and whether the child would be able to remember what he looked like.

He was also contemplating what he should do in the final two to three years of his life.

In November 2019, Cai Lei embarked on his mission to combat amyotrophic lateral sclerosis (ALS). Over the course of three years, he built a patient-centric ALS data platform reaching more than 10,000 individuals, established four public welfare funds dedicated to ALS, and manages the world’s largest online community for ALS patients. In the quest to find life-saving treatments for ALS patients, he also assembled a dedicated research team of 15 members and advanced more than 50 drug candidates in the ALS pipeline.

However, Cai Lei’s physical condition has been steadily deteriorating. He is no longer able to care for himself; his legs are continuously atrophying, and the symptoms of amyotrophic lateral sclerosis (ALS) have gradually progressed upward toward his head. Lifting his neck has become strenuous, facial spasms and muscle fasciculations have begun to appear, and speaking has become labored. Even the simple act of lowering his head to drink water has become difficult for him.

Cai Lei’s greatest concern is not the rapid progression of his disease, but the impending loss of his ability to work.He is well aware that many major initiatives related to ALS would come to a halt if he were to take a break, as he has become the central driving force in the effort to conquer the disease.

Over the 200-year history of research on amyotrophic lateral sclerosis (ALS),“No One Fights as Hard as Cai Lei”. If there is only one Cai Lei in the entire human race over 200 years, he hopes to exhaust all his “bullets” until the very last moment of his life, bringing hope to the next generation of patients.

The following is Cai Lei’s personal account:

“A top scientist in the field of neuroscience once said that, thanks to my efforts, drug development for amyotrophic lateral sclerosis (ALS) has been advanced by at least 10 years. In my heart, however, I believe it has been pushed forward by 20 years.”

To accelerate the search for life-saving treatments, I assembled a dedicated team of 15 professionals specializing in basic scientific research and investigation. By discarding conventional thinking and adopting an interdisciplinary, cross-sector approach, we are fully committed to advancing our research efforts to conquer this disease. Our team aspires to become the most diligent and persistent group in the world, conducting comprehensive research on amyotrophic lateral sclerosis (ALS).

Currently, I maintain connections with virtually all scientists in China focusing on CNS disorders such as amyotrophic lateral sclerosis (ALS). Dozens of academicians accessible to me have facilitated the integration of top-tier laboratory resources into my R&D team.

Now, I am able to interact with one to two hundred scientists each year.This has also been made possible by media support. Each promotional report has enabled me to connect with more scientists and resources. A previous article about me garnered high readership and wide influence; on the very day it was published, five or six relevant scientists reached out to me, expressing that they were deeply moved by the piece and wished to prioritize their ALS drug development pipelines.

This scenario truly occurs time and again.

In collaborating with these scientists, I provide not only funding but also resource integration to help advance drug development.

Over the past two to three years, we have participated in numerous investments closely related to amyotrophic lateral sclerosis (ALS), such as gene editing and induced pluripotent stem (iPS) cells, with total financing reaching hundreds of millions. Furthermore, in collaboration with Professor Chen Gong from the Jinan University Guangdong-Hong Kong-Macao Institute of CNS Regeneration, we have advanced the development of a key drug pipeline. This project secured RMB 100 million in funding, of which over RMB 90 million was utilized within just a few months. We have demonstrated the ability to raise and deploy capital rapidly, enabling swift execution.

Over the past two years, I have personally spearheaded the R&D of more than 50 drugs for amyotrophic lateral sclerosis (ALS), arguably achieving the fastest pace worldwide. Typically, it takes over ten years for a drug to progress from scientific research and animal studies to clinical trials and regulatory approval for market launch. I have managed to compress this timeline, enabling each drug to enter clinical trials within just three months. In recent months, we have advanced three additional candidates into clinical trials.

“I believe the most perfect outcome in conquering ALS would be saving my own life and those of hundreds of thousands of fellow patients. Yet from day one of founding this venture, I have resolved to confront death.”

In the race against time to develop drugs for amyotrophic lateral sclerosis (ALS), approximately 60 ALS patients die every day in China alone. To accelerate the research and development of ALS therapies,"We Collaborated to Build the World's Largest Preclinical Experimental Platform for ALS"At its peak, we maintained 1,500 ALS model mice, operated a 4,500-square-meter animal experimentation facility, with nearly 2,000 square meters dedicated to animal housing alone. Annual electricity and air conditioning costs amounted to approximately RMB 2 million.

As is well known, clinical trial recruitment during drug development is extremely stringent. For patients with amyotrophic lateral sclerosis (ALS), the majority do not meet the inclusion criteria, and those who do may not necessarily be willing to enroll. This makes patient recruitment highly challenging; one investigational drug failed to complete its enrollment even after a year and a half of recruitment efforts. By implementing precise, hour-by-hour recruitment strategies, we can enroll patients within the same day, without overnight delays.Last time, we recruited 700 patients in just two hours.

Since the beginning of this year, I have been working to establish a research tissue sample platform with the aim of creating the world’s largest biobank for amyotrophic lateral sclerosis (ALS) research. Prior to this initiative, there were no ALS samples available in China. Without access to living specimens for study, foundational research on neurological diseases is severely hindered. I am determined to make this happen.

"In addition to pledging to donate my own body in the future, I engaged in individual discussions with fellow patients early this year, appealing to both their emotions and reason. Ultimately, I secured agreements from approximately 1,000 individuals to donate their bodies. To date, five fellow patients have completed the donation process."

Medical research requires big data; a sample size of just one or two is virtually meaningless. Therefore, I aim to build the world’s largest cohort, with a sample size of 1,000 participants."I hope scientists from China and around the world will come here to conduct research, as I want to bring hope to the next generation of patients."。

Establishing this research cohort of biological samples is of paramount importance. A team led by a U.S. National Academy member is currently eager to study these amyotrophic lateral sclerosis (ALS) samples. He has even stated that with just 100 cases, significant breakthroughs in understanding the pathology and etiology of the disease could be achieved.

I have always believed that those who go all out to fight for the development of life-saving drugs for ALS are not doctors or scientists, but often patients. This is especially true for rare diseases, where patients and patient organizations abroad often take the lead in engaging the industry to ultimately conquer these diseases together.

I have never claimed to be great or noble. If it were not for contracting this disease, having in-depth conversations with patients, and understanding the cruelty and predicaments associated with this condition, I would not have undertaken this endeavor. No one should portray themselves as overly virtuous. I am a blend of idealism and rationality. I am highly rational; indeed, I am already contemplating matters concerning my legacy. However, if I were merely rational, I would not have pursued this path. I wish to fight for my ideals.

In fact, among fellow patients, there are many who are wealthier and have more resources than I do. Take Steve Jobs, for instance: when he was diagnosed with pancreatic cancer, he did not establish a $1 billion or $10 billion fund to conquer the disease. Many capable individuals either do not think of doing such things or simply choose not to.

"Throughout my entrepreneurial journey, I have disrupted numerous existing business models. The electronic invoices, electronic official seals, and electronic stamps I developed represent fundamentally transformative innovations."Then, I should leverage my disruptive and innovative capabilities to undertake an initiative.

At the time of my initial diagnosis, I had little understanding of amyotrophic lateral sclerosis (ALS) and was driven to study this disease. For nearly two centuries, the etiology of ALS has remained unclear, with no well-defined therapeutic targets and no effective treatments available. Therefore, I sought to leverage advantages in technology infrastructure and internet-based big data to break down data silos among hospitals and build an ALS data platform. At that time, the world’s largest ALS database contained only 3,000 cases. Hospitals lacked sufficient data support, as they primarily held outpatient and inpatient records, without comprehensive 360-degree data encompassing psychological and familial aspects, particularly longitudinal data covering the two- to three-year period after patients left the hospital.

Some patients deteriorate very rapidly; this is not necessarily due to the swift progression of their disease, but rather stems from self-abandonment or abandonment by their families, often leading to unfortunate death within a year.

How to Study This Disease?Therefore, research on amyotrophic lateral sclerosis (ALS) is insufficient; as a rare disease, it attracts limited interest from researchers.

In November 2019, I announced my intention to embark on a new entrepreneurial venture, initially by assisting medical experts and scientists in developing a big data platform for amyotrophic lateral sclerosis (ALS) to accelerate their research progress. Within just one year, our data platform had accumulated thousands of cases.

Generally, if you establish an institution and ask others to input data, they will not comply. This is particularly true for databases built by commercial entities; patients may suspect that you intend to sell their data to pharmaceutical companies for profit, leading them to question why they should provide their information in the first place.

Building such a database requires operational engagement, and even more critically, a patient leader to establish a positive, trust-based relationship with patients.Some patients are unwilling to provide data; some are unable to operate smartphones, while others are concerned about privacy leaks.

We reach patients by operating WeChat groups; there are more than a dozen groups dedicated solely to data entry, each with a capacity of 500 members.Including partner patient communities, we reached a total of over 10,000 individuals.

I once asked a friend to help me analyze the reasons behind my success in this endeavor. It was not an issue of basic competence; the greatest challenge lay in securing patient collaboration and their willingness to contribute data. This required putting my life on the line.In China, most institutions do not lack the funding or technology to undertake this endeavor; rather, few are willing to risk their lives for it, with decisions driven more by commercial or professional considerations.

Therefore, there must be a patient leader who possesses sufficient social influence, public recognition, and a strong commitment to public welfare and dedication, demonstrating through actions his willingness to strive tirelessly for the treatment of all patients, even at the cost of his own life.

"The establishment of this database was achieved through the relentless efforts of my team and me."

Currently, I am still working relentlessly, especially during the first half of this year, when I worked until the early hours of the morning every day, essentially putting in more than 16 hours of work daily.

I believe it is worth doing. Few can strive as hard as I do for this cause; if I cease to push forward, many initiatives will come to a halt.

Many people mistakenly believe that I only work on the big data platform for ALS,In fact, I have already completed the strategic layout across twelve aspects.

Building a big data platform for ALS accounts for only one-fifth of the work; this represents just a portion of Beijing Aisikang Medical Technology Co., Ltd.’s operations. With a patient-centric approach, we have established a 360-degree, full-lifecycle research data platform, which has now become the world’s largest non-governmental ALS data platform.

For my second role, I operate and support the world’s largest patient community for individuals with amyotrophic lateral sclerosis (ALS). My team and I communicate with hundreds of patients every day. We assist them with genetic testing, analyze test reports, review pathological findings, provide nursing guidance, facilitate communication, and offer psychological support. Although I have lost the ability to physically touch my phone, I still need to respond to hundreds of WeChat messages daily. Since these patients are close friends and view me as their sole hope, some become so anxious that they cannot sleep if I fail to reply to their messages.

Starting from the third item, much of the work falls outside the scope of Beijing Aisikang Medical Technology Co., Ltd. Having long been immersed in the internet industry and participated in financing rounds totaling over RMB 10 billion, I have cultivated relationships with numerous prominent investors over the past decade. Consequently, I have established connections with approximately one hundred domestic investment institutions, including top-tier firms, even reaching the chairman level. We have built a collaborative platform for an ALS (amyotrophic lateral sclerosis) investment fund, with a scale exceeding RMB 10 billion.

The fourth matter concerns a public welfare funding platform for amyotrophic lateral sclerosis (ALS). I have established four charitable funds, three of which were initiated by me. Recently, we also set up a charitable trust dedicated to conquering ALS, designed to exist in perpetuity, much like the Nobel Prize. Even if I were no longer able to continue my work, it would still support scientists and organizations in their research efforts. To date, these funds have cumulatively invested over ten million yuan. For this cause, we launched the second Ice Bucket Challenge; however, public charitable support remains insufficient.

Many people are unaware that I possess strategic vision. My entrepreneurial journey did not begin with Aisikang; I started my ventures on JD.com in 2014 and have successfully founded four companies in succession. Therefore, from day one of establishing Aisikang, I knew exactly what needed to be done.

"While I was still largely healthy, I believed that, given the progression of my condition, it was imperative to accelerate the development of drugs for amyotrophic lateral sclerosis (ALS) and make a determined effort."I know that if I fall ill,Sustained financial support is also an issue.. I do not rely on donations to sustain the development of initiatives for amyotrophic lateral sclerosis (ALS). I have even sold my own house. However, conquering ALS is not an overnight endeavor; it may require hundreds of millions, or even billions, in funding. Therefore, I need to generate income by leveraging my existing resources, including my supply chain capabilities in e-commerce, to support long-term capital investment.

Therefore,To establish a sustainable business model that fuels the fight against ALS, I developed a live-streaming e-commerce platform.

The live streaming team now has about 10 people providing support. I merely posted a video announcing my plan to start live streaming to raise funds for the charitable cause of amyotrophic lateral sclerosis (ALS), and it ended up trending on the hot search lists.

However, running a live-streaming e-commerce business is extremely challenging, and I still find the results less than ideal. Nevertheless, I will continue with this endeavor, which is currently supported by my wife.I will gradually step back, continuing to fight on as an ALS warrior.

In fact, I may have only about a year left before I collapse, so I must accelerate my efforts and strive even harder. Therefore,Early this year, I began to reflect on and plan for the future of my ALS advocacy work after my passing.

Currently, I am also in the process of fundraising and engaging in discussions with several prominent entrepreneurs and investors. However, it has been extremely challenging, as nearly no one is willing to invest; few believe that I can conquer amyotrophic lateral sclerosis (ALS), particularly given that the founder is nearing the end of life. In the face of such skepticism, I consider it understandable, but I will not give up.

Next, I will also seek a successor. My health is failing, but the initiatives I have championed must not stall. I am looking for someone who, like me, is willing to go all out, and who possesses the competence, energy, and passion to fully commit to becoming a spiritual leader for patients. At present, I have yet to find such a person.Later, I came to terms with it; I no longer expect to find another “me.”

I remain optimistic. While I am facing death rationally, I know that my existence may help conquer ALS.