A prominent Chinese business figure who has been battling amyotrophic lateral sclerosis (ALS) has bravely sought to draw attention to the debilitating disease, waving away the desire to protect his own personal dignity by instead hoping to raise greater awareness of the illness and advance the fight to find a cure.
Cai Lei, former vice-president of the Chinese e-commerce giant JD Group, was diagnosed with ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, back in 2019.
As one of the most prominent public figures in the country suffering from the disease, Cai is racing against time in his campaigning efforts as he now enters the tragic terminal stage of the disease.
Completely paralyzed and unable to speak, Cai now continues to communicate with the world through advanced eye-tracking technology, which can audibly recreate his voice.
In a heart-felt and touching interview with the China Media Group(CMG), Cai courageously sought to expose the extent of his current condition and explained why he wants to be seen.
"By common logic, as someone who has always been strong-willed, who highly valued dignity and took pride in the workplace, I should indeed close the door and look to hide myself from others, so as to preserve my last shred of pride and dignity. To be honest, it is an extremely cruel blow to my personal self-esteem to have the cameras pointed at me now and have the whole of society watching me unable to stand, unable to straighten my neck, and unable to speak, with a crooked mouth, a sunken face and drooling with a listless look," he said.
"But why am I still sitting here, willing to be interviewed? Because in the face of the lives of hundreds of thousands of fellow patients, my personal dignity has become insignificant. One fatal reason why ALS has not been conquered in the past 200 years is that it is too cruel. As a result, the vast majority of patients choose to lock themselves up at home after their condition worsens. Due to this loss of dignity, they all collectively disappear from view. But if no one sees the cruelty of this disease, how could society truly take it seriously? How could capital get involved? How could scientists have a sense of urgency? Thus, it becomes a dark, vicious circle," said Cai.
Since being diagnosed with the disease, Cai has transformed himself from a poorly patient into one of China's leading advocates for rare disease research.
He has helped establish China's first pathological sample bank for ALS research and has worked with the BGI Group, a Chinese life sciences and genomics company, and the Chinese Academy of Sciences' supercomputing center to advance genetic research into the disease.
Cai also helped build the world's largest ALS patient research data platform. By applying an AI-powered research system, the platform has significantly accelerated drug development and scientific studies.
"To break this black box, someone must step forward and lay bare their most broken and vulnerable side to the world in the bleakest way. Since I may still have a bit of social attention, I must step forward. I'm sitting here today by no means to beg for sympathy from the public. If my appearance on camera can enable one more investor to see the pain points in this field, inspire one more scientist to have the urge to tackle it, or simply help those patients who are hiding in the dark and in despair know that there are still people fighting desperately for them, then it is completely worthwhile. I can only preserve my own dignity if I hide away, but I can strive for the hope of all mankind to defeat this disease if I stand up. In the face of this bigger mission, my own personal misery feels insignificant," he said.
Thanks to the campaigning efforts of Cai, nearly 300 drug research pipelines have been advanced, with more than 30 projects entering clinical trials. Some targeted therapies have already shown the potential to slow or even halt disease progression in trial participants.
In addition, Cai has personally invested in and raised more than 100 million yuan (nearly 15 million U.S. dollars) for ALS research, and established a medical big-data platform connecting tens of thousands of ALS patients to support research and treatment development.
Former JD executive wages defiant fight against ALS, campaigns to raise awareness
