蔡磊发表演讲：这是我送给渐冻症的倒计时|als|国际罕见病日|渐冻人|渐冻症|蔡磊

6月21日，世界渐冻人日，蔡磊发布了一支演讲视频《倒计时》。

他用眼动仪写下两千余字的稿子，用AI合成自己的声音，对渐冻症发表“决战宣言”，将渐冻症送入倒计时。

Cai Lei, former vice-president of Chinese e-commerce giant JD Group, released a public speech video titled Countdown on the video-sharing platform Bilibili on World Amyotrophic Lateral Sclerosis (ALS) Day, which fell on Sunday, turning a life-ending narrative into a powerful declaration of war against the disease.

以下是演讲片段：

在我的房间里，放了四个时钟。无论我面向何方，都能听到震耳欲聋的倒计时。这是我送给渐冻症的倒计时。我一定会亲眼见证，这个给全球五十多万家庭带来痛苦的杀手，被我们亲手终结。

In my room, four clocks stand sentinel. No matter which way I turn, I hear the deafening countdown, a countdown I have gifted to ALS. And I will live to see this killer, which has brought agony to over half a million families worldwide, brought down by our own hands.

它应该没料到，我是一个这么难缠的对手。整整较量六年多，它把我打到全身瘫痪，话都说不出来。但是，我仍在用眼球仪，用眼睛和它战斗；如果眼睛看不见了，我会连上脑机接口，用脑子和它战斗；万一脑子也转不动了，很有可能我们能把意识传送到具身机器人里，我换一个身体跟它战斗。

It never expected such a tenacious adversary. For more than six years, we have fought — and it has reduced me to total paralysis, robbed me of speech. But I still fight back with my eyes, through an eye-tracker. If my sight fails, I will connect a brain-computer interface and wage war with my mind. And if even my mind falters — well, perhaps by then we will have found a way to transfer consciousness into an embodied robot, and I will simply trade this body for a new one, and keep fighting.

它肯定没想到，这个世界上有一个人，从一开始就没把它当成绝症。因为在它之前，我已经战胜了一个比它更可怕的对手，名为“绝望”。

It surely never imagined that there exists one person who, from the very beginning, refused to see it as a death sentence. Because before ALS, I had already conquered a far more terrible foe — one called Despair.

蔡磊：我已经战胜了“绝望”

渐冻症（Amyotrophic Lateral Sclerosis, ALS）全称肌萎缩侧索硬化症，患者大脑和脊髓中的运动神经元逐渐退化死亡，丧失肌肉控制能力，无法说话、进食，直至无法呼吸。

在此过程中，患者意识始终保持清醒，被迫见证自己一步步走向生命终点。

不可逆的身体“冻结”，使渐冻症成为医学界公认的最残酷的不治之症之一。

Amyotrophic Lateral Sclerosis (ALS) is a devastating neurodegenerative disease where motor neurons progressively degenerate, leading to muscle paralysis, loss of speech, and respiratory failure. Tragically, patients remain fully conscious throughout, forced to witness their bodies gradually "freeze".

自2019年9月确诊渐冻症以来，在与病魔抗争的六年多里，蔡磊的身体机能都在无可挽回地变慢，但他推动攻克渐冻症的脚步却一直在不断提速。

图源：网络截图

面对残酷的疾病，他笑着宣告：“它想不到，我是个这么难缠的对手。”

Since his diagnosis in 2019, Cai's physical condition has deteriorated, yet his efforts to accelerate research have only intensified. Over the past six years, he has defeated despair with unyielding will, making monumental contributions to the fight against ALS.

在这六年间，为攻克渐冻症，他做出了这些努力和贡献：

▌打破数据孤岛

蔡磊夫妇搭建了全球规模最大的渐冻症患者科研数据平台“渐愈互助之家”，链接了超1.8万名患者，将传统临床试验的受试者招募周期从18个月压缩至最快24小时。

He established the world's largest ALS patient research database, connecting over 18,000 patients and reducing clinical trial recruitment time from 18 months to as little as 24 hours.

▌填补病理空白

推动建立中国首个渐冻症脑脊髓病理科研样本库，并带头签署遗体捐献协议，解决了国内科研“无脑可用”的窘境。

He spearheaded China's first ALS brain and spinal cord tissue bank and signed an organ donation pledge, resolving critical shortages in research samples.

▌加速药物研发

联动数百家机构，推进近300条药物研发管线，其中超30个项目进入临床试验阶段。同时引入AI科研大脑，将文献发掘与靶点初筛效率提升数十倍。

Collaborating with hundreds of institutions, Cai has advanced nearly 300 drug pipelines, with over 30 entering clinical trials. Integrating AI has further boosted target screening efficiency exponentially.

蔡磊的这些举措将中国渐冻症基础研究与临床转化的整体进度，至少提前了十年。正如蔡磊的夫人段睿所说：“只要不放弃，四面八方都是前方。”

一个人的冲锋，全社会的接力

“如果有人问起你爸爸去哪了？请你告诉他，我爸是孙悟空，他正在大闹天宫。”

这是蔡磊在演讲结尾留给儿子小菜籽的话。人类是血肉之躯，但也正因为充满了软肋，才更具有生命的韧性。

"Your dad is the Monkey King, wreaking havoc in heaven," Cai told his young son at the end of the documentary. Human beings are fragile, yet it is precisely this vulnerability that breeds extraordinary resilience.