As the first light of 2026 dawned, Cai Lei, the 47-year-old former vice president of JD.com and an amyotrophic lateral sclerosis (ALS) patient, released a New Year's open letter to the global "locked-in" community. The letter provides an update on his health and details the significant progress made in the international collaboration to find a treatment for ALS.

Also known as Lou Gehrig's disease, ALS is a rare and currently incurable condition that affects nerve cells in the brain and spinal cord. It typically leads to a loss of muscle control, with an average survival period of two to five years. Since his diagnosis six years ago, Cai has focused on accelerating scientific research and building data-driven platforms for the disease.

Health status and daily challenges

In his letter, composed entirely through eye-tracking technology, Cai shared that he has entered the late stages of the disease. His ALS Functional Rating Scale (ALSFRS-R) score – a standard clinical tool for measuring physical function – has dropped into the single digits from a full score of 48. This progression has resulted in a significant loss of mobility and increasing difficulties with speech and respiratory function.

"ALS is unimaginably cruel," Cai wrote, describing the sensation of a perfectly clear mind trapped in a body "immobilized like a magnet." He noted that the physical toll of the disease often leads to feelings of isolation, which is "more brutal than being in a vegetative state."

Despite these physical challenges, Cai continues to work over ten hours a day. He emphasized that his focus remains on scientific breakthroughs, which he views as the fundamental key to saving lives.

Accelerating research through AI and collaboration

The letter noted 2025 as a milestone year for the AskHelpU ALS Patient Platform, a major initiative founded by Cai. The platform now hosts data from over 18,000 patients – including whole genome sequencing – serving as a vital engine to accelerate ALS research and treatment development in China.

Over the past year, Cai's team worked with over 60 global research groups, 50 biotech companies and 10 hospitals to drive nearly 100 research projects. These partnerships helped advance 15 potential treatments and drug pipelines into clinical trials. Over the last six years, the initiative has supported preclinical research for nearly 300 treatment paths.

A major driver of this progress has been the integration of AI. In the letter, Cai credited AI with a "hundred-fold" acceleration in research efficiency, as the systems process millions of scientific papers and patents 24 hours a day. This technology helps researchers identify potential therapeutic paths – such as immune system reconstruction via bone marrow transplants – at a pace that was previously impossible for human researchers alone.

"We are living in the greatest era in history," Cai stated, pointing to the compounding effect of technology and the "brief window of peace and prosperity" the world currently has. He believes a disruptive breakthrough could even be mere months away.

Strengthening care systems and patient legacy

Beyond laboratory research, Cai's team has focused on improving the daily quality of life for patients. Over the past year, they established a standardized ALS nursing system and worked to lower the costs of specialized care equipment for families.

Cai maintains a close connection with the community through more than 40 patient groups. He likens these fellow patients to "fish swimming 1,000 meters below sea level," finding each other through a shared frequency in the vast darkness. This support network provides a vital sense of connection for those facing the isolation of the disease.

The letter also serves as a tribute to those Cai calls his "comrades-in-arms" – the patients who have passed away since his diagnosis. He expressed profound gratitude for those who, in their final moments, donated their brain and spinal cord tissues to science, describing these acts as a "spark" that lights the path for future researchers.

"This road is incredibly difficult," he wrote, "but the only thing we can do is wipe away our tears and keep working."

A call for resilience

While acknowledging that a universal cure has not yet been found, Cai expressed optimism about the current era of technological growth. He emphasized that the "compounding effect of knowledge" – the exponential speed at which discovery happens once a foundation is built – gives the community a real chance at a breakthrough.

"In the vastness of the universe, even a galaxy spanning 100,000 light-years is as small as dust, but the possession of life is the luckiest existence in the cosmos." Cai wrote, concluding his letter with a reflection on the value of life.

"Let us cherish this luck and never give up on the search for a cure. For the sake of life, never surrender."

For more: The Icebreakers: Fighting ALS – believe in the power of believing

Cover image designer: Zhu Shangfan