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进入疾病终末期的蔡磊,说了这些话
Xin Lang Cai Jing· 2026-01-01 15:42
Core Viewpoint - The letter from Cai Lei emphasizes hope and determination in the fight against amyotrophic lateral sclerosis (ALS), highlighting the advancements in technology and research that could lead to breakthroughs in treatment by 2026 [1][2]. Group 1: Research and Development - Cai Lei's team has collaborated with over 60 top research teams and more than 50 biotech companies, resulting in nearly 100 ALS research projects and 15 drug pipeline breakthroughs for clinical translation [2]. - The establishment of the "ALS Mutual Aid Home" has registered over 18,000 patients, creating a significant ALS patient cohort for research [2]. - The development of an AI research platform has analyzed nearly 40,000 ALS research papers and ranked hundreds of drugs based on preclinical trial results, significantly increasing research efficiency [3]. Group 2: Patient Support and Community - Cai Lei maintains over 40 support groups for ALS patients, fostering a sense of community and mutual encouragement among patients despite their physical challenges [4]. - The team has successfully established and promoted a care system for ALS patients, reducing the high costs of care equipment through social support [3]. Group 3: Future Aspirations - The team aims to accelerate drug development and collaborate with cutting-edge technologies like brain-machine interfaces and embodied intelligence to create caregiving robots that alleviate the physical and financial burdens on ALS patients' families [5]. - Cai Lei believes that breakthroughs in ALS treatment could lead to significant advancements in addressing other medical challenges, such as Alzheimer's disease [5].
蔡磊发公开信
Xin Lang Cai Jing· 2026-01-01 14:37
Core Viewpoint - The public letter from ALS patient and former JD Vice President Cai Lei highlights the severe progression of his condition and the lack of effective treatments for ALS, while expressing hope for future advancements in research and therapy [1][2]. Group 1: Patient Condition and Challenges - Cai Lei's ALS Functional Rating Scale (ALSFRS-R) score has dropped from a total of 48 to a single-digit number, indicating the terminal stage of the disease [1]. - The progression of ALS leads to severe physical limitations, including paralysis and loss of essential functions such as speech and swallowing, creating a profound emotional and physical burden [1]. Group 2: Research and Community Efforts - Despite the challenges, Cai Lei emphasizes the importance of ongoing research and collaboration among scientists, pharmaceutical companies, and patients, citing advancements in treatment for specific genetic types of ALS, such as SOD1 [1]. - The establishment of the "Gradual Recovery Mutual Aid Home" platform has connected thousands of patients and contributed to the creation of China's first ALS pathological research gene sample bank, facilitating research into the genetic causes of the disease [4]. Group 3: Philanthropic Initiatives - Cai Lei has founded an ALS charity fund and trust, investing several million yuan into initiatives like the "Life Science Icebreaker Award" and "Icebreaker Scholarship" to support research and patient care [5]. - His efforts have been recognized with the title of "National Self-Reliance Model" in May 2025, reflecting his commitment to advocacy and support for ALS patients [5].
蔡磊证实:病情近终末期
第一财经· 2026-01-01 13:34
Core Viewpoint - The article highlights the struggles and resilience of Cai Lei, a former vice president of JD.com, who has been diagnosed with ALS (Amyotrophic Lateral Sclerosis) for over six years. Despite his deteriorating condition, he continues to advocate for research and collaboration in the fight against the disease, emphasizing the hope for breakthroughs in treatment [3][10]. Summary by Sections - Cai Lei's condition has progressed to the late stage of ALS, severely affecting his mobility and speech. He now relies on an eye-tracking device for communication and work, which allows him to perform basic office tasks [10][14]. - In a video released on December 31, 2025, Cai expressed his desire for the footage to remain unseen, as it signifies his inability to speak. The video serves as a motivational message for fellow patients, urging them to focus on research and collaboration as a source of hope [4][6][13]. - Despite enduring significant physical pain and limitations, Cai remains committed to his work and the fight against ALS, stating that success in this battle is the only hope for his family [10][14].
蔡磊证实渐冻症病情接近终末期
新华网财经· 2025-12-30 08:15
12月30日,蔡磊渐冻症病情接近终未期 相关话题冲上热搜。据悉,京东前副总裁确诊渐冻症已超过6年。 今天,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。 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。 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。 蔡磊表示, 他的渐冻症病情已经进入晚期,接近终末期 。他日夜时刻经受着常人无法想象的痛苦,但他还在满负荷地工作。 你的一小步,才是渐冻症患者们的一大步。你是他们的希望! 泪目!太不容易了,希望您新的一年能逐渐恢复起来,加油!会有希望的! 加油蔡总!活着就有希望!您已经很了不起了。 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。 您的无畏与 ...
美国神经生物学家与肿瘤学家唐·克利夫兰——坚持临床试验,与AI保持距离
Xin Lang Cai Jing· 2025-12-22 10:07
Group 1 - The article discusses the advancements in research on Amyotrophic Lateral Sclerosis (ALS) led by Don Cleveland, highlighting his contributions to understanding the disease's mechanisms and developing new therapies [2][3] - Cleveland emphasizes the importance of perseverance in scientific research, stating that intelligence and experimental skills are not the only keys to success; rather, persistence is essential [2][4] - The article mentions the potential of Antisense Oligonucleotide (ASO) therapy in treating genetic forms of ALS, with Cleveland noting that some progress has been made in reversing symptoms, although results are still not ideal [5][6] Group 2 - Cleveland expresses skepticism about the immediate impact of artificial intelligence (AI) in his field, acknowledging its potential but stressing the need for patience in drug testing and development [6][8] - He highlights the importance of rigorous clinical trials, stating that the effectiveness of ALS therapies can only be determined through long-term results [6][7] - The article reflects Cleveland's belief in the international nature of science, advocating for collaboration and competition to drive scientific progress, and noting China's significant investment in research [8][9]
预告:渐冻症纪实专题《破冰者》
Xin Lang Cai Jing· 2025-12-21 13:27
(来源:CGTN) 【预告:渐冻症纪实专题《#破冰者#》】#冬至#是一年中最寒冷、最漫长的黑夜,但总有人在逐渐冰封 的寒夜里,燃起希望的火把。CGTN渐冻症纪实专题《破冰者》即将上线。The Winter Solstice brings the year's coldest and most enduring darkness, but there are always those who light torches of hope in the gradually freezing cold night. Coming soon: "The Icebreakers," a CGTN documentary special on living with ALS. #渐冻 症# 转自:CGTN ...
蔡磊称自己只剩3到5年生命?本人澄清:此为疾病普遍临床数据
Feng Huang Wang· 2025-11-26 07:24
【免责声明】本文仅代表作者本人观点,与和讯网无关。和讯网站对文中陈述、观点判断保持中立,不对所包含内容的准确性、可靠性或完整性提供任何明示或暗示的保证。请 读者仅作参考,并请自行承担全部责任。邮箱:news_center@staff.hexun.com 凤凰网科技讯 11月26日,渐冻症抗争者蔡磊发文回应"蔡磊称自己只剩3到5年生命" ,他表示,此热搜热榜内容属于扭曲误导。我原话意思是:渐冻症 患者平均生存期只有三到五年。这是疾病的普遍临床数据,并非对我个人生命的判定。 他表示,长期以来,部分自媒体一直炒作我的病情,时而造谣 "身体好转",时而渲染 "病情恶化",严重偏离事实。我不得不来说明一下。渐冻症残酷 致命,我的身体也在持续恶化,并不美好,这是事实,但这不是重点,重要的是我还可以通过科技手段继续全力科研推进,还有希望,而且希望越来越大! 科技不仅可以改变生活,也可以改写生命。希望大家多关注持续在推进的科研工作,社会各界在一起支持疑难病攻克,每一份努力都可能给所有人带来健康 的福祉,我也准备在即将到来的新年给大家汇报更多的工作成果。多关注美好和希望,少炒作和误导,谢谢! (责任编辑:王治强 HF013) ...
对话今年首度直播的蔡磊:身体正被侵蚀,仍雷打不动投入科研
Nan Fang Du Shi Bao· 2025-11-25 09:37
Core Insights - The article highlights the resilience and ongoing efforts of Cai Lei, a former vice president of JD.com, who is battling ALS (Amyotrophic Lateral Sclerosis) and continues to contribute to scientific research despite his deteriorating health [2][4]. Group 1: Personal Struggles and Commitment - Cai Lei has expressed that his condition has made it increasingly difficult to participate in live broadcasts and interact, yet he remains committed to his research and communication efforts [4]. - He emphasizes that as long as his health permits, he will continue to focus on scientific exploration and collaboration [4][5]. Group 2: AI in Research - Cai Lei's team has developed an "AI Scientific Brain" that significantly enhances research efficiency, reportedly increasing the speed of research by dozens to hundreds of times [4][5]. - The AI system autonomously conducts literature searches, reading, analysis, and discussions, surpassing human researchers in efficiency [5]. Group 3: Research Progress and Collaboration - The team has systematically reviewed nearly 40,000 core documents related to ALS and is prioritizing hundreds of potential drug candidates for further validation [4][5]. - Cai Lei's research team regularly updates on their progress and has engaged in discussions with biotech companies and academic institutions regarding ALS therapies, with expectations for significant breakthroughs in the near future [5].
蔡磊进入渐冻症晚期,研发的药物对病友起效对自己没用
Xin Lang Cai Jing· 2025-10-27 17:40
Core Points - The article discusses the current health condition of Cai Lei, a former vice president of JD.com, who is suffering from late-stage amyotrophic lateral sclerosis (ALS) and has lost most of his physical abilities [1][5] - Despite his severe condition, Cai Lei continues to lead research and development projects aimed at ALS treatment, having funded over 50 million yuan in external research support over the past 20 months [5][9] Group 1 - Cai Lei has lost the ability to speak, swallow, and move, requiring assistance for daily activities and medication [1] - He uses an eye-controlled device to communicate and manage various business operations, working from 8 AM to midnight [5] - His efforts in drug development have positively impacted other ALS patients, with one young patient reportedly regaining her health after treatment [5] Group 2 - Since his diagnosis in 2019, Cai Lei has established a big data platform connecting over 10,000 patients and initiated several charitable projects, investing tens of millions of yuan [9] - He was awarded the "National Self-Reliance Model" in May, expressing that this honor is a recognition not just for himself but for the entire ALS community [9] - Cai Lei remains optimistic about the future of ALS research, stating that miracles have already happened and will continue to occur [5][9]
蔡磊近况:已丧失语言能力,用眼控仪打字交流,仍常线上办公!
新浪财经· 2025-09-26 10:35
Core Viewpoint - The article highlights the ongoing efforts of Cai Lei, who, despite severe health challenges due to ALS (Amyotrophic Lateral Sclerosis), continues to lead research initiatives and fundraising efforts to combat the disease, demonstrating resilience and commitment to scientific advancement [2][8]. Group 1: Health Condition and Communication - Cai Lei has lost all language abilities and is unable to move his arms, legs, or neck, relying solely on liquid food for sustenance [2] - He communicates using an eye-control device, typing quickly to maintain daily interactions, although he requires frequent breaks due to fatigue [4] - Despite his physical limitations, Cai Lei remains mentally sharp and actively participates in online research meetings [4] Group 2: Research and Collaboration - Between July 26 and August 31, Cai Lei's research team held 14 online meetings with international experts on various topics related to ALS treatment [5] - Cai Lei has reached out to AI companies like DeepMind for collaboration in tackling ALS, highlighting the potential of AI in solving complex biological problems [5] Group 3: Funding and Donations - In the past 1 year and 8 months, Cai Lei's team has donated over 50 million yuan to external research projects, with plans to continue funding numerous scientific initiatives [7] - He initiated the "Spring Bud" plan, committing 10 million yuan to support ALS research, with additional personal contributions planned [8] - In January 2024, Cai Lei announced a further donation of 100 million yuan for ALS research and clinical projects [8] Group 4: Achievements and Impact - In 2024, under Cai Lei's leadership, 10 drug pipelines have entered clinical stages, and the "Gradual Recovery Mutual Aid Home" has reached 15,000 ALS patients [9] - Cai Lei established an ALS animal testing base to expedite drug testing and efficacy validation [9] - He received the "National Self-Strength Model" title in May 2023, which he views as recognition for both himself and the broader ALS community [9]