2026.01. 01 本文字数：862，阅读时长大约1.5分钟 京东前副总裁确诊渐冻症已超过6年。2025年12月31日，他通过媒体发布了一段视频，这段视频记 录了蔡磊"失声"前说的一段话。 蔡磊在自己的社交账号也转发了这段视频，并表示，"这是去年拍摄但本希望尘封的视频，那时候还 可以说话，面部，嘴巴，下巴，牙床还没有萎缩塌陷变形。" 渐冻症逐步剥夺了他的行动和语言能力，目前，蔡磊只能依靠眼控仪与外界交流。蔡磊说，尽管身体 受限，他还将不遗余力地与社会各界一起，与渐冻症抗争到生命最后一刻。 他说，"当时我们都希望不要有播放的一天"，因为 这意味着他已经无法说话 。 在视频中，他为病友们加油打气， 他说渐冻症重大突破性的跨越应该就在这几年 ，请大家多关注科 研与合作，那是疑难病人的生命希望。 这段视频让人泪目，评论区的网友也为他加油并送上祝福。 此前12月3日，蔡磊在接受媒体采访时曾表示：目前五体瘫软，无法言语。压痛、口水、呛咳、吞 咽、憋气每天都在折磨我。随着病情发展，目前，腰背部肌肉萎缩，坐立困难，通常连续工作一至两 小时，即会感到腰部疼痛，需由旁人搀扶站起并拍打按摩以缓解不适。此外，呼吸功能进一步减弱， ...

Core Insights - The article highlights the advancements in assistive technology for individuals with disabilities, particularly focusing on eye-tracking technology and the potential future of brain-computer interfaces [1][4]. Group 1: Current Technology and Usage - The eye-tracking system is currently utilized by individuals with severe disabilities, allowing them to perform basic office functions such as typing, browsing the web, and document processing [1]. - The system's parameters, including cursor speed and click sensitivity, can be adjusted to enhance user experience, leading to improved accuracy in communication and work tasks [1]. Group 2: Personal Experience and Challenges - The individual featured in the article, a former executive at JD.com, describes severe physical limitations due to ALS, including muscle atrophy and respiratory difficulties, which necessitate the use of a breathing machine at night [1]. - Despite these challenges, the individual has adapted to using the eye-tracking technology effectively for communication and work, although the physical strain remains significant [1]. Group 3: Advocacy and Research Initiatives - Since his diagnosis in 2019, the individual has led efforts to establish a large data platform connecting over 10,000 patients and has initiated the first pathological and genetic sample bank for ALS in China [4]. - Significant financial contributions have been made towards establishing a public welfare fund, charitable trust, and the "Life Science Icebreaker Award," amounting to several tens of millions of yuan [4].

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]