Seven Mid-Autumns After His Diagnosis, Cai Lei Funds an ALS Drug Hunt With a Livestream

This was Cai Lei's seventh Mid-Autumn Festival since amyotrophic lateral sclerosis took his body, one festival at a time. Doctors gave him three to five years in 2019; he is still here, able to move nothing but his eyes, and — by the account CCTV's Relative Theory programme broadcast for the holiday — still working past eleven most nights on the thing that will probably outlive him: a research push to find a drug for the disease that is killing him.

Cai made his name and his money as an e-commerce executive, then spent them differently. His team's pipeline has produced important findings on hundreds of candidate compounds, none yet a breakthrough; a document he circulated to colleagues this month tallies the search in a drumbeat of futility — doctors and experts consulted, without result; drug companies approached, without result; 20 million papers and patents screened by AI, in progress and likely, he writes, to stay without result. The one bright line is a candidate aimed at the SOD1 genetic form of the disease. Cai himself has the sporadic kind.

The money comes from a livestream. In 2022 his wife, Duan Rui, a chartered accountant, quit her firm to sell goods on camera five nights a week — a Chinese institution part QVC, part telethon — and pours everything the channel earns into the research. A few million yuan has arrived in public donations; the bulk, by the programme's accounting, is earned on camera. She tests products until two or three in the morning and runs the sampling rooms herself. Cai lives near his hospital; she lives with their son beside his school. They meet rarely — partly to protect him from infection, partly, she admits, because seeing him is unbearable. "I want to see him," she said. "But when I do, it hurts."

He conducts his half of the marriage through WeChat, typing with his eyes. "In messages I'm still a normal person," he told the reporter. "I'll see her again after I've beaten the disease." The reporter, dispatched to persuade Duan Rui to slow down, got the answer regulars of Chinese business media will recognise: "I know her too well — she won't listen."

The country has followed this marriage the way it follows a serial, and the Mid-Autumn framing is not incidental: the festival celebrates reunion, and this is a couple who engineer distance in order to fight. Cai keeps Monkey King statues at home, one for fearlessness; the largest now sits at the entrance of Duan Rui's studio. Asked, letter by letter, which of the two is the Monkey King, he typed that readers have it backwards — she is Sun Wukong, and he is merely the monk on the road, making her carry the load.