6月21日，世界漸凍人日，蔡磊發布了一支演講視頻《倒計時》。

他用眼動儀寫下兩千余字的稿子，用AI合成自己的聲音，對漸凍癥發表“決戰宣言”，將漸凍癥送入倒計時。

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.

以下是演講片段：

在我的房間里，放了四個時鐘。無論我面向何方，都能聽到震耳欲聾的倒計時。這是我送給漸凍癥的倒計時。我一定會親眼見證，這個給全球五十多萬家庭帶來痛苦的殺手，被我們親手終結。

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.

它應該沒料到，我是一個這么難纏的對手。整整較量六年多，它把我打到全身癱瘓，話都說不出來。但是，我仍在用眼球儀，用眼睛和它戰斗；如果眼睛看不見了，我會連上腦機接口，用腦子和它戰斗；萬一腦子也轉不動了，很有可能我們能把意識傳送到具身機器人里，我換一個身體跟它戰斗。

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.

它肯定沒想到，這個世界上有一個人，從一開始就沒把它當成絕癥。因為在它之前，我已經戰勝了一個比它更可怕的對手，名為“絕望”。

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：我已經戰勝了“絕望”

漸凍癥（Amyotrophic Lateral Sclerosis, ALS）全稱肌萎縮側索硬化癥，患者大腦和脊髓中的運動神經元逐漸退化死亡，喪失肌肉控制能力，無法說話、進食，直至無法呼吸。

在此過程中，患者意識始終保持清醒，被迫見證自己一步步走向生命終點。

不可逆的身體“凍結”，使漸凍癥成為醫學界公認的最殘酷的不治之癥之一。

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月確診漸凍癥以來，在與病魔抗爭的六年多里，蔡磊的身體機能都在無可挽回地變慢，但他推動攻克漸凍癥的腳步卻一直在不斷提速。

圖源：網絡截圖

面對殘酷的疾病，他笑著宣告：“它想不到，我是個這么難纏的對手。”

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.

在這六年間，為攻克漸凍癥，他做出了這些努力和貢獻：

▌打破數據孤島

蔡磊夫婦搭建了全球規模最大的漸凍癥患者科研數據平臺“漸愈互助之家”，鏈接了超1.8萬名患者，將傳統臨床試驗的受試者招募周期從18個月壓縮至最快24小時。

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.

▌填補病理空白

推動建立中國首個漸凍癥腦脊髓病理科研樣本庫，并帶頭簽署遺體捐獻協議，解決了國內科研“無腦可用”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.

▌加速藥物研發

聯動數百家機構，推進近300條藥物研發管線，其中超30個項目進入臨床試驗階段。同時引入AI科研大腦，將文獻發掘與靶點初篩效率提升數十倍。

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.

蔡磊的這些舉措將中國漸凍癥基礎研究與臨床轉化的整體進度，至少提前了十年。正如蔡磊的夫人段睿所說：“只要不放棄，四面八方都是前方。”

一個人的沖鋒，全社會的接力

“如果有人問起你爸爸去哪了？請你告訴他，我爸是孫悟空，他正在大鬧天宮。”

這是蔡磊在演講結尾留給兒子小菜籽的話。人類是血肉之軀，但也正因為充滿了軟肋，才更具有生命的韌性。

"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.

圖源：網絡截圖

在世界上，有太多無法治愈的罕見病，有無數的人在痛苦中輾轉，但也同樣會有千萬個蔡磊站出來。在“破冰”的逆旅中，不只有蔡磊，也有與他并肩的醫學專家、科研團隊、無數咬牙堅持的漸凍癥患者。

漸凍癥、艾滋病、“蝴蝶寶貝”……還有太多的病癥等待著我們去攻克。病，還是那個病。人，不再是以前的人。

只要世界上還有星星之火存在，只要科學與善意還在不斷匯聚，只要蔡磊那句“千鑿萬錘出深山，烈火焚燒若等閑”還在回響，戰勝病痛的“破冰”之路，終究會走到冰消雪融的那一天。

編輯：左卓

實習生：徐楚冰

來源：今日頭條 新聞周刊 新浪網 CGTN 新京報 蔡磊個人微博 Bilibili

跟著China Daily

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