本文字数：4704，阅读时长大约8分钟 作者 | 第一财经 吴斯旻 "以身试药"约100次后，京东原副总裁、渐冻症患者蔡磊的病情进入终末期。 当面部肌肉也出现严重萎缩、颈部亦被"冰封"之后，蔡磊用眼控仪在电脑的一端对第一财经记者表达了他的担忧： 在蔡磊之后，国内科学界、资本市场对于渐冻症的关注度"很可能减少"，然后"迅速冷却下来"。 今年1月1日，蔡磊在社交平台发布公开信，披露了最新病情进展：国际通用的ALS身体功能评分（ALSFRS-R） 量表已从总分48分降至个位数，进入疾病终末期。 2026.01. 11 这份公开信是蔡磊用眼动仪"书写"而成。2019年，41岁的蔡磊被确诊为肌萎缩侧索硬化症（ALS，俗称"渐冻 症"）。2023年年初蔡磊在接受第一财经采访时，他的双手就已失去活动能力。一年后，他再次接受第一财经采访 时表示，由于"工作太忙""几乎没有时间做任何的康复训练"，加上反复试药产生的副作用，他的病情在持续恶化。 当年5月，一场突如其来的感冒将蔡磊送进了ICU，此后他的身体急转直下。2025年11月底蔡磊在直播中通过眼控 打字坦言，自己失去了声音无法再进行直播，但希望大家多关注、持续推进渐冻症科研 ...

蔡磊在其助理的帮助下，通过眼控仪与第一财经记者进行了一场延续一周的特殊"对话"。 "以身试药"约100次后，京东原副总裁、渐冻症患者蔡磊的病情进入终末期。 当面部肌肉也出现严重萎缩、颈部亦被"冰封"之后，蔡磊用眼控仪在电脑的一端对第一财经记者表达了他的担忧：在蔡磊之后，国内科学界、资本市场对于 渐冻症的关注度"很可能减少"，然后"迅速冷却下来"。 今年1月1日，蔡磊在社交平台发布公开信，披露了最新病情进展：国际通用的ALS身体功能评分（ALSFRS-R）量表已从总分48分降至个位数，进入疾病终 末期。 这份公开信是蔡磊用眼动仪"书写"而成。2019年，41岁的蔡磊被确诊为肌萎缩侧索硬化症（ALS，俗称"渐冻症"）。2023年年初蔡磊在接受第一财经采访 时，他的双手就已失去活动能力。一年后，他再次接受第一财经采访时表示，由于"工作太忙""几乎没有时间做任何的康复训练"，加上反复试药产生的副作 用，他的病情在持续恶化。当年5月，一场突如其来的感冒将蔡磊送进了ICU，此后他的身体急转直下。2025年11月底蔡磊在直播中通过眼控打字坦言，自 己失去了声音无法再进行直播，但希望大家多关注、持续推进渐冻症科研工作。 也是 ...

Core Viewpoint - The article discusses the advancements in technology, particularly eye control and brain-machine interfaces, as a means for patients with ALS (Amyotrophic Lateral Sclerosis) to communicate and continue their research efforts despite the challenges posed by the disease [1] Group 1: Patient Experience and Technology - ALS patient and former JD Vice President Cai Lei is exploring brain-machine interfaces as a potential solution if eye control technology becomes insufficient for work needs [1] - Cai Lei is actively involved in promoting clinical research related to brain-machine interfaces at various hospitals, including Huashan Hospital and Tangdu Hospital, with many fellow patients participating [1] Group 2: Misinterpretation of Health Status - Cai Lei clarified that statements regarding his life expectancy of 3 to 5 years refer to the average survival rate for ALS patients, not a personal prognosis [1] - There has been misinformation circulated by some media outlets regarding his health status, oscillating between claims of improvement and deterioration, which he states is misleading [1] Group 3: Hope and Future Research - Despite the challenges of ALS, Cai Lei emphasizes the importance of continuing research and the potential of technology to change lives and improve health outcomes [1] - He encourages societal support for research on difficult diseases, highlighting that every effort could lead to significant health benefits for all [1]

Core Points - The news highlights the severe health condition of Cai Lei, a former vice president of JD.com, who has lost his ability to speak and has limited mobility due to amyotrophic lateral sclerosis (ALS) [1][2] - Cai Lei continues to lead his team and manage various projects despite his physical limitations, emphasizing his commitment to research and collaboration in the field of life sciences [2][7] Group 1: Health Condition - Cai Lei's wife revealed that he has completely lost his ability to speak and has significant mobility issues, requiring assistance for basic activities [2] - Cai Lei himself confirmed his condition, stating he experiences daily physical challenges but remains mentally engaged in his work [2] Group 2: Research and Contributions - Over the past 20 months, Cai Lei has facilitated over 50 million yuan in research funding, supporting numerous projects in various scientific fields, including neuroscience and artificial intelligence [7] - He established the "Gradual Recovery Mutual Aid Home" platform, connecting thousands of ALS patients and creating China's first pathological research genetic sample library for ALS [7][8] Group 3: Recognition and Awards - Cai Lei was awarded the title of "National Self-Reliance Model" on May 18, which he regarded as a significant honor, reflecting his perseverance and the plight of others with rare diseases [9]

Core Insights - The article highlights the inspiring journey of Cai Lei, a former executive at JD.com, who transformed from a successful business leader to a dedicated advocate for ALS (Amyotrophic Lateral Sclerosis) research after being diagnosed with the disease in 2019 [1][3][7] - Cai Lei's efforts have led to significant advancements in ALS research and patient support, including the establishment of a large data platform for ALS patients and a charity fund to support research and treatment [3][6][8] Group 1: Career and Achievements - Cai Lei was recognized as a pioneer in the implementation of electronic invoices in China, earning the title of "the first person of electronic invoices" [1][2] - He joined JD.com during its rapid growth phase and successfully led the development of China's first electronic invoice within 45 days, revolutionizing the e-commerce industry [2][3] - His dedication to work was evident as he often worked over 12 hours a day, contributing significantly to JD.com's growth and earning accolades for his contributions to reform [2][3] Group 2: Personal Struggles and Advocacy - After his ALS diagnosis, Cai Lei decided to leave his position at JD.com to focus on combating the disease, investing his savings to create a global ALS patient data platform [3][6] - His wife, Duan Rui, played a crucial role in supporting him, transforming their personal challenges into a broader advocacy effort for ALS research and patient care [5][6] - Together, they established a charity fund and a trust to ensure the continuity of their research efforts, demonstrating a commitment to improving the lives of future ALS patients [6][8] Group 3: Impact and Legacy - As of the end of 2024, Cai Lei and Duan Rui have created a charity fund worth nearly 40 million yuan, contributing millions to ALS research and support for patients [6][8] - Cai Lei's story serves as a beacon of hope for ALS patients, emphasizing the importance of perseverance and the potential for positive change even in the face of dire circumstances [8]