Imagine receiving a death sentence at the peak of your career, with a ticking clock that mercilessly counts down the remaining years of your life. This was the harsh reality Cai Lei, a former Vice President of JD.com, faced in 2019 when, at the age of 41, he was diagnosed with Amyotrophic Lateral Sclerosis (ALS), a debilitating and incurable neurodegenerative disease, often referred to as Lou Gehrig’s disease. For Cai, a man synonymous with relentless work ethic and an almost superhuman drive, the diagnosis came as a profound shock.
However, rather than succumbing to despair, Cai chose to fight back. His weapon? Not resignation, but an audacious, almost impossible, mission to find a cure for ALS. His battlefield? Not the boardroom, but the complex and often disheartening world of medical research. His motivation? Not only to extend his own life, but to rewrite the ending for countless others facing the same devastating diagnosis.
Published in March 2023, his book, “Believe,” (相信) is more than just a personal memoir; it’s a testament to the indomitable human spirit, a raw and intimate look at the emotional and physical toll of ALS, and a compelling call to action for greater awareness and support for this often-overlooked disease. In “Believe,” Cai takes readers on a journey through the uncharted territory of his personal battle, detailing his relentless quest for answers, his frustration with the limitations of existing treatments, and his determination to accelerate ALS research, regardless of the odds.
“Believe,” has become an instant bestseller in China, resonating with a nation familiar with Cai’s success in the tech world and now captivated by his unwavering determination in the face of this formidable foe. With over 2.1 million readers on JD.com alone, the book has received a 94.6% recommendation rate and continues to inspire a growing community of readers who find hope and resilience in Cai’s remarkable story.
Facing the “Iron Horse”: A Relentless Struggle for Answers and Acceptance
Cai Lei, the epitome of a driven tech executive, a man who seemingly squeezed 80 hours of work into a 24-hour day, found his life taking a sharp, unexpected turn in the fall of 2019. It started subtly, almost imperceptibly, with a persistent twitching in his left arm. Initially dismissing it as a symptom of his relentless work schedule, Cai powered through, his focus firmly fixed on the next project, the next deadline, the next milestone. His life, after all, had always been a race against time, a relentless pursuit of achievement.
Born in a small town in Henan province, Cai’s childhood was marked by hardship. Living in a drafty, unheated house in a military compound, he witnessed firsthand the struggles of poverty. His father, a stern military man, instilled in him a deep-seated belief in the power of hard work and self-reliance. “Everything must be earned through your own efforts,” was a mantra ingrained in him from a young age. This belief fueled Cai’s academic success, earning him the nickname “alien” among his classmates for his seemingly effortless ability to ace exams, often finishing them in half the allotted time.
This relentless drive propelled him through a successful career, first as a civil servant, then as a tax manager for Samsung, followed by a stint as the Chief Tax Officer at Vanke, one of China’s largest real estate developers. In 2011, he joined JD.com, China’s e-commerce giant, where his work ethic and innovative thinking quickly earned him a reputation as a force to be reckoned with. He spearheaded the development and implementation of China’s first electronic invoice system, a move that saved the company millions of dollars annually and streamlined its operations.
Even his personal life reflected this “efficiency-first” approach. His courtship with his wife was a whirlwind affair, culminating in a marriage proposal on their second date. “I don’t have time for dating,” he told her, “if we click, let’s get married; if not, let’s not waste each other’s time.” To his surprise, she agreed, and they built a life together, both driven by their careers, their shared values of hard work and ambition forming a strong foundation for their relationship.
However, the persistent twitching in Cai’s arm refused to be ignored. He embarked on a frustrating odyssey through Beijing’s top hospitals, undergoing a battery of tests, each yielding inconclusive results. The uncertainty gnawed at him, the possibility of something serious lurking beneath the surface a constant, unwelcome companion.
The turning point came on September 30, 2019, when Cai sat across from Dr. Fan Dongsheng, a leading ALS specialist at Peking University Third Hospital. After months of inconclusive tests and vague pronouncements of “get more rest,” Dr. Fan delivered the devastating news: “It seems there’s only one possibility left.” He didn’t need to utter the words. Cai knew what he meant.
The doctor, a seasoned professional, refrained from painting a grim picture of the disease’s progression, but Cai, his mind racing, had already scoured the internet, piecing together the grim reality of ALS – the gradual loss of muscle control, the inevitable paralysis, the eventual respiratory failure, and the stark reality of a 2-5 year life expectancy. He felt a chilling disconnect from the world, a sensation he later described as watching himself move through life from a detached vantage point, a spectator in his own reality.
As the news sunk in, a wave of despair washed over him. How could this be happening to him? He had just become a father, his career was thriving, life was unfolding according to plan. Now, he was facing a death sentence, a cruel twist of fate that threatened to unravel everything he had worked so hard to achieve.
The initial reactions from his family mirrored his own shock and disbelief. His mother, a woman who had endured her share of hardships, could only offer silent support, her heart breaking for her son, who had just started his own family, his life brimming with promise, only to be dealt such a cruel blow. His colleagues, accustomed to his tireless energy and unwavering optimism, were left speechless, their grief palpable in the stunned silence that followed his announcement.
However, amidst the heartbreak and despair, one unwavering voice emerged. His wife, the woman who had agreed to a whirlwind marriage with a workaholic, stepped forward, her voice resolute: “Don’t even think about it,” she said, rejecting his suggestion of a divorce, “Marriage is about being each other’s backstop. And right now, I am your backstop.” Her words, a beacon of strength and unwavering love, pierced through the fog of despair, offering a lifeline, a glimmer of hope in the face of overwhelming darkness. Cai, the man who had always relied on his own strength, found himself leaning on his wife, her unwavering support giving him the courage to face the “Iron Horse” of ALS and to begin the fight of his life.
Embracing the Impossible: The Power of Technology and Human Connection
For Cai Lei, the harsh reality of an ALS diagnosis did not translate into passive acceptance. The man who had built his career on disrupting industries and pushing boundaries refused to be a bystander in his own life, even when faced with an opponent as formidable as ALS. Armed with his unwavering determination and fueled by a burning desire to find a solution, Cai decided to leverage his greatest assets – his experience in the tech world and his innate ability to connect with people.
Cai understood that traditional medical research often operates at a glacial pace, particularly for rare diseases like ALS, which lacked the funding and attention given to more prevalent conditions. He knew that waiting for a miracle cure was not an option. Time was his most precious commodity, and he was determined to use every remaining second to fight back. “If we don’t help ourselves, who will?” he often asked his fellow patients.
His entrepreneurial instincts kicked into high gear, and he began to envision a solution – a platform that could accelerate ALS research by breaking down the silos that often hinder progress. Leveraging his deep understanding of data and technology, he set out to create “Jianyuhuzhuzhijia” (渐愈互助之家), a groundbreaking online platform designed to connect ALS patients, researchers, and medical professionals across China.
This platform was more than just a database; it was a lifeline, a virtual community where patients could share their experiences, find support, and contribute valuable data to accelerate research. Cai, understanding the need for accurate and comprehensive information, meticulously designed a detailed questionnaire that captured not only patients’ medical history and current symptoms but also their lifestyle, occupation, and family history.
He recognized that every data point could potentially unlock a clue to understanding the disease’s origins and progression, providing invaluable insights for researchers seeking to develop effective treatments. This ambitious endeavor, however, was met with skepticism from some industry veterans. “Building a patient database for a rare disease? It’s been tried before, and it’s never worked,” they cautioned, citing the logistical challenges and the difficulty of engaging patients. Cai, however, was undeterred. “If it’s never worked, it’s because no one with the right motivation has tried it,” he responded, fueled by a conviction that only a fellow patient could truly understand.
As the platform took shape, Cai embarked on another critical aspect of his mission – connecting with fellow ALS patients. Armed with his phone and driven by a deep sense of empathy, he personally reached out to thousands of patients across China, building a network of support and encouragement.
His phone became a lifeline, his voice a beacon of hope for those struggling with their diagnosis. He listened intently to their stories, sharing their anxieties, their frustrations, and their dwindling hopes. He offered encouragement, shared information about potential treatments, and most importantly, reminded them that they were not alone in this fight.
Cai encountered a myriad of individuals whose lives had been irrevocably altered by ALS. There was Lao Zhu, a jovial government worker from Henan province, whose once-strong legs had gradually weakened, forcing him to rely on a wheelchair. Xiao Liang, a successful business executive from Chongqing, found himself struggling to climb stairs just months after a carefree trip to Tibet. And Xiao Chen, a young man from Shandong, who had dedicated his life to caring for his mother with ALS, was dealt a cruel blow when he was diagnosed with the same disease just months after her passing.
Each story was a poignant reminder of the indiscriminate nature of ALS, a disease that robbed people of their independence, their dignity, and ultimately, their lives. But amidst the hardship and despair, Cai witnessed remarkable resilience. He saw families banding together, friends offering unwavering support, and patients finding solace in their shared struggle.
He recognized the power of human connection, the strength that comes from knowing you are not alone in your battle. His interactions with these patients fueled his determination, reminding him that his mission was not just about finding a cure for himself, but for all those whose lives had been touched by this devastating disease.
Driven by an insatiable desire to find solutions, Cai delved into the world of potential treatments, exploring both conventional and unconventional approaches. He meticulously researched medical journals, consulted with leading experts, and even ventured into the realm of alternative medicine, seeking any glimmer of hope that could offer relief to his fellow patients. His quest led him to traditional Chinese medicine practitioners, promising miracle cures, and even encounters with self-proclaimed healers who claimed to possess mystical powers.
While these ventures often resulted in disappointment, they provided valuable insights into the complex world of healthcare and the desperation that drives people to seek any possible solution. He learned to navigate the fine line between hope and false promises, sharing his experiences with fellow patients, cautioning them against charlatans and emphasizing the importance of evidence-based approaches.
His journey was not without its challenges. He faced skepticism from established medical institutions, encountered financial roadblocks, and battled his own declining health. But Cai’s determination never wavered. He pressed on, embracing the “impossible,” driven by a belief that even in the face of overwhelming odds, every effort, every connection, every experiment could bring them one step closer to a cure.
His story, a testament to the power of human resilience and the boundless potential of innovation, serves as a beacon of hope for a community battling a relentless foe. Cai Lei, the man who refused to be defined by his diagnosis, was determined to rewrite the ending, not just for himself, but for every individual facing the “Iron Horse” of ALS. His journey, far from over, was just beginning.
Redefining Hope: A Legacy of Innovation and Unwavering Belief
For Cai Lei, acceptance of his ALS diagnosis was not a passive surrender; it was the starting pistol for a final, audacious race against time. Armed with his deep understanding of the tech world, his vast network, and an almost irrational belief in the power of human ingenuity, Cai embarked on a mission to accelerate ALS drug development, a journey fraught with both daunting obstacles and glimmers of hope.
He recognized that the traditional drug development pipeline, often likened to a decade-long, billion-dollar gamble, was too slow and too risky for a disease with a 2-5 year average lifespan. His goal was not to play by the existing rules but to rewrite them, to forge a new path that could deliver a cure in time for himself and the countless others battling ALS.
His initial strategy was to create a venture capital fund, leveraging his financial expertise and connections to attract investments and channel them towards promising research projects. He envisioned himself as the conductor of an orchestra, bringing together the brightest minds in science and the financial resources needed to transform groundbreaking research into life-saving treatments.
However, reality proved far less receptive than his optimistic projections. He embarked on a relentless fundraising tour, delivering impassioned presentations to over 100 investors and industry leaders, meticulously outlining the market potential and the social impact of ALS research. He calculated the economic burden of the disease, the desperation of patients willing to pay any price for a cure, and the vast untapped market waiting for a breakthrough.
He described the power of his patient database, “Jianyuhuzhuzhijia,” a treasure trove of data that could streamline clinical trials and provide invaluable insights for drug development. But his message, despite his passion and logic, often fell on deaf ears. Investors, accustomed to predictable returns and risk-averse strategies, balked at the long timelines, the high failure rates, and the inherent uncertainty of investing in a disease with no known cure.
“Why throw money down a bottomless pit?” a seasoned investor asked, offering instead a personal donation to ease Cai’s own medical expenses. Others suggested a more conventional approach, urging him to focus on existing treatments and palliative care, to accept the inevitable rather than chase an elusive dream. Even within his own team, doubts began to surface. Colleagues, worn down by the endless cycle of research, experimentation, and disappointment, questioned the feasibility of his mission, their faith in a cure waning with each setback.
“You’re killing yourself with this relentless pace,” his wife pleaded, her concern growing as she witnessed his physical decline, the once-tireless executive now struggling to button his shirt, his strong hands losing their grip, his speech becoming increasingly slurred. The emotional toll on his family weighed heavily on Cai. He saw the sacrifices his wife was making, the time she carved out of her own demanding career to care for him, the worry etched on her face as his condition worsened. He understood their concerns, but the urgency of his mission outweighed his own fear and exhaustion. “What choice do I have?” he asked, his voice laced with both defiance and despair, “If we don’t fight, we’re guaranteed to lose.”
Undeterred by the skepticism and roadblocks, Cai began to explore unconventional avenues. He shifted his strategy from building a fund to becoming a catalyst, a connector, a facilitator for ALS research. He leveraged his platform, his connections, and his growing media presence to advocate for greater awareness and support. He reached out to scientists working on promising but underfunded projects, offering not just financial support but also access to his patient database, a resource that could accelerate their research and streamline clinical trials.
His efforts began to bear fruit, attracting a diverse network of collaborators, each driven by their own expertise and a shared desire to conquer this formidable foe. He connected with Dr. Chen Gong, a renowned neuroscientist at Jinan University, whose groundbreaking research on in-situ neural regeneration offered hope for replacing damaged motor neurons. He partnered with Dr. Li Xiaoguang, a leading expert on spinal cord regeneration at Capital Medical University, whose work showed promise in restoring lost nerve function. And he collaborated with Dr. Li Longcheng, a pioneer in RNA activation therapy, whose innovative approach targeted the genetic root of SOD1 ALS, a specific type of ALS caused by a mutation in the SOD1 gene.
Cai’s efforts extended beyond the realm of conventional medicine, embracing new and emerging technologies that offered hope for disrupting the traditional drug development paradigm. He forged a partnership with Dr. Lu Yunfeng, a world-renowned nanotechnology expert from UCLA, to explore the use of nanocarriers to deliver therapeutic agents directly to the central nervous system, bypassing the blood-brain barrier, a major obstacle in treating neurological diseases. He connected with Dr. Thomas Herrmandörfer, a German physicist who, along with Dresden International University President Richard H.W. Funk, had achieved success in using pulsed magnetic fields to stimulate the regeneration of damaged motor neurons, a non-invasive approach that could revolutionize ALS treatment.
Recognizing the critical need for human brain tissue to advance ALS research, Cai initiated a groundbreaking “brain bank” project, urging his fellow patients to donate their brains and spinal cords after death. This unprecedented initiative, a testament to his willingness to push boundaries and challenge taboos, aimed to establish the world’s largest ALS brain bank, providing scientists with invaluable resources to understand and ultimately conquer this disease.
This bold move, however, was met with resistance from some quarters. Traditional beliefs and cultural sensitivities surrounding death and bodily integrity made it a difficult conversation, particularly for families grappling with the imminent loss of loved ones. Cai, understanding their hesitation, patiently explained the scientific rationale, emphasizing the potential of these donations to unlock crucial insights into the disease’s origins and progression. “If we had access to more brain tissue, we might have already found a cure,” he told them, appealing to their desire to leave a legacy of hope for future generations.
His message resonated with many, and the brain bank project gradually gained momentum, becoming a symbol of the collective determination to fight back against this relentless foe. By January 2023, over 1000 ALS patients and their families had signed up, their selfless act of generosity offering a ray of light in the midst of darkness.
To further support this research, Cai decided to embrace yet another unconventional approach – livestreaming e-commerce. Leveraging his experience in the e-commerce world and his growing online following, he launched “Pobingyizhan” (破冰驿站), a livestreaming channel where he not only shared his personal journey and advocated for ALS awareness but also sold everyday products, from groceries to household goods. The proceeds from these sales were channeled directly into funding ALS research projects, providing a sustainable revenue stream for his mission.
This foray into the world of livestreaming, initially met with skepticism by some of his colleagues and investors, proved surprisingly successful. Cai’s charisma, his genuine passion for his cause, and his willingness to connect with viewers on a personal level resonated with audiences. His livestreaming channel became a platform not only for promoting products but also for sharing his story, his struggles, and his unwavering belief in the power of hope.
His efforts earned him recognition and accolades, including being named the 2022 Chinese Philanthropist of the Year and a nominee for the 2022 Beijing Role Model. He used these platforms to amplify his message, advocating for greater awareness and support for ALS research, urging everyone to embrace the “impossible” and to believe in the power of collective action to overcome even the most daunting challenges.
Despite his declining health, Cai Lei refused to be silenced. He pressed on, his voice growing weaker but his resolve becoming ever stronger. He continued to attend conferences, meet with scientists, and rally support for his cause. He challenged the status quo, questioned conventional wisdom, and pushed boundaries, inspiring others to join his fight and to believe that a cure, once a distant dream, was within reach.
Cai Lei’s story, a testament to human resilience, innovation, and unwavering belief, continues to inspire millions in China and beyond. His journey, a race against time, is a reminder that even in the face of seemingly insurmountable odds, hope remains a powerful force, capable of igniting change and rewriting the ending for those battling a formidable foe. His legacy, far from fading, is just beginning to take shape, paving the way for a future where ALS, the “Iron Horse,” will finally be tamed.
“Believe” is more than a poignant memoir; it’s a powerful testament to the strength of the human spirit in the face of seemingly insurmountable odds. Cai Lei, diagnosed with the devastating neurodegenerative disease ALS, refuses to accept defeat. Instead, he embarks on a relentless quest to accelerate research and find a cure, not only for himself but for the thousands of others facing the same terrifying diagnosis.
His book offers an unflinchingly honest look at the emotional and physical toll of ALS, laying bare the frustrations of a man accustomed to controlling his destiny, now forced to confront his own mortality. Yet, amidst the stark realities of his condition, Cai’s story is one of defiance, innovation, and an unshakeable belief in the power of human ingenuity to overcome even the most daunting challenges.
His journey challenges readers to reexamine their own perceived limitations and to embrace the “impossible.” Cai’s unwavering dedication to a cause from which he may not personally benefit serves as a powerful reminder that the legacy we leave behind is shaped not by our circumstances but by the impact we have on the world. “Believe” is an essential read for anyone seeking inspiration, hope, and a deeper understanding of the complexities of life, death, and the unwavering pursuit of a better future. It is a story that resonates far beyond the confines of a debilitating disease, reminding us that every individual, regardless of circumstance, has the capacity to make a difference.
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