Exclusive | Racing with death: Entrepreneur with ALS enters battlefield of disease research

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a neurodegenerative disease. Patients experience gradual muscle atrophy and loss of strength, eventually leading to paralysis. This process is like the body gradually freezing. However, throughout the course of the disease, they still maintain clear consciousness until death.

In China, this horrifying disease claims the lives of over 60 people every day, with an annual death toll of more than 20,000. Furthermore, this condition plunges 100,000 ALS families into the abyss of medical and caregiving expenses that can reach millions of yuan each year. What's frustrating is that there is still no cure for ALS, primarily because the number of cases of rare diseases is far lower than that of common diseases. Developing a drug for ALS is hampered by the challenges of research, long timelines, and low returns, making it unattractive for pharmaceutical companies and funders to invest in ALS drug research. This is also why there is still no life-saving drug in this field globally.

Cai Lei, upon being diagnosed with ALS, faced the relentless specter of death and, undaunted, embarked on an entrepreneurial journey.

In his search for a cure for his illness, Cai encountered people who claimed to be "folk masters" coming to him. He categorized various pseudoscientific methods into many factions, thinking of them as some perverse humor in his fragile life.

As Cai's life approached its final chapter, he united doctors and scientists from all over the country, determined to develop a cure for ALS collectively. His motivation extended beyond self-preservation; he saw countless compassionate ALS patients whose happy families were being torn apart. He felt that with whatever ability he had left, he should help more people.

As a patient, Cai not only established the "Recovery Together" patient big data sample platform, enabling doctors and researchers scattered across different locations to access comprehensive disease progression data, but he also created dozens of mutual support WeChat groups. These groups provided hope for those deeply ensnared by the helplessness of terminal illness, both patients and their families.

During his final entrepreneurial journey, Cai encountered numerous difficulties: the torment of illness, a lack of funds, continuous research and development failures, and relentless attacks from detractors. Any of these obstacles would have been enough to deter most people, but he continued to press forward despite his ailing health.