渐冻症

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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]
京东原副总裁蔡磊深夜发文,确认丧失语言能力
第一财经· 2025-09-26 01:07
Core Viewpoint - The article discusses the current condition of Cai Lei, a former vice president of JD.com, who is suffering from ALS (Amyotrophic Lateral Sclerosis). Despite his severe physical limitations, he continues to lead his team and manage various aspects of work through eye control technology, emphasizing his determination to fight against the disease and contribute to scientific research [3][4][5]. Group 1 - Cai Lei has lost all ability to speak and has limited mobility, relying on liquid food for sustenance. His condition has been stable for several months, and he communicates through eye control technology, typing dozens of words per minute [3][5]. - He announced that over the past 20 months, he has funded more than 50 million in research projects, collaborating on numerous scientific initiatives. He believes that miracles are happening, with patients who were previously expected to die now recovering [4][5]. - Cai Lei expresses a strong will to continue fighting against ALS, stating he would rather "fight to the death" than succumb to the disease without dignity [4].
京东原副总裁蔡磊深夜发文,确认丧失语言能力
Di Yi Cai Jing Zi Xun· 2025-09-26 01:07
Core Viewpoint - The article discusses the current health condition of Cai Lei, a former vice president of JD.com, who is suffering from ALS (Amyotrophic Lateral Sclerosis) and has lost his ability to speak and move, but continues to lead his team through eye-controlled technology [2][3]. Group 1: Health Condition - Cai Lei has completely lost his ability to speak and has limited mobility, only able to consume liquid food [2]. - His wife, Duan Rui, expressed her feelings of loneliness if he were to pass away [2]. - Cai Lei confirmed his condition on social media, stating he is experiencing daily physical challenges but remains mentally engaged in his work [2]. Group 2: Work and Research Contributions - Despite his physical limitations, Cai Lei is still actively managing his team and handling various operational tasks through eye control technology [2][3]. - He has announced over 50 million yuan in research funding for external projects over the past 20 months, indicating a strong commitment to advancing research in his field [2]. - Cai Lei believes that miracles are happening in the treatment of ALS, with previously terminal patients now recovering, and he sees this as a pivotal moment for AI and life sciences [2]. Group 3: Communication and Workload - Cai Lei's assistant reported that he communicates effectively using eye control technology, typing dozens of words per minute [3]. - Although his work intensity has decreased, he still participates in online research meetings and manages to work daily, balancing work with necessary rest periods [4]. - His cognitive abilities remain sharp, allowing him to contribute meaningfully to his team's efforts [4].
“已经完全没有语言能力了……”蔡磊深夜发文
券商中国· 2025-09-26 01:06
日前,渐冻症患者、京东前副总裁蔡磊的近况引发关注。 据红星新闻报道,9月25日, 助理陈女士向记者确认, 蔡磊已经完全没有语言能力了。当晚, 话题"助理确认蔡磊丧失语言能力"登上热搜第一。 近日,妻子段睿透露蔡磊近况,称他已经完全没有语言能力了,胳膊、脚、脖子都无法活动,目 前仅能吃一点流食。"如果他走了,我会真的很孤独"。 段睿目睹了丈夫身体的变化:"今年年初,丈夫还能说几句话,现在已经完全丧失语言能力;他 的胳膊、腿没有力量了,站起来需要别人搀扶;现在还能吃一点流食,以后可能得靠胃造瘘手 术,解决饮食问题。" "不是说很多事情不能做而已,是身体上已经有痛苦。"段睿说,"有些事情,你做再多心理建设 也没有用,我不知道我怎么准备……一切都是不可控的。" 深夜, 蔡磊在微博上发文:"看到了大家很关切我的现状,确实现在五体瘫软无法言语,压痛、 口水、呛咳、吞咽、憋气每天都在折磨,但我还有眼睛和耳朵,请大家放心,我每天依然在带领 团队,科研、运营、合作、人事、财务等等大量工作我每天依然通过眼控在高效处理。" 蔡磊表示:"宁可与渐冻症战死,不会面对绝症屈辱等死。" 他还透露,近期刚宣布了过去20个月对外科研资助超过5 ...
蔡磊妻子透露蔡磊近况:很不好,已经完全没有语言能力
Qi Lu Wan Bao· 2025-09-24 03:29
近日,蔡磊妻子段睿在一档采访中透露:蔡磊近况很不好,已经完全没有语言能力了,胳膊、脚、脖子 都无法活动,目前仅能吃一点流食。 采访中段睿提到,今年年初,丈夫还能说几句话,现在已经完全丧失语言能力;他的胳膊、腿没有力量 了,站起来需要别人搀扶;现在还能吃一点流食,以后可能得靠胃造瘘手术解决饮食问题。 确诊渐冻症后,决不放弃的蔡磊搭建起"渐愈互助之家"患者医疗大数据科研平台,至今已链接上万名患 者。在他的努力下,中国第一个渐冻症病理科研基因样本库得以建立,这一成果为基因层面病因研究打 开了新的大门。 (齐鲁晚报·齐鲁壹点客户端编辑 石卉 综合九派新闻、新周刊、海报新闻等) "不是说很多事情不能做而已,是身体上已经有痛苦。"段睿说,"有些事情,你做再多心理建设也没有 用,我不知道我怎么准备……一切都是不可控的。" 蔡磊出生于1978年5月,曾担任京东集团副总裁。2019年,他不幸确诊渐冻症,然而这种罕见病目前无 药可医。 渐冻症是一种罕见病,被世界卫生组织列为五大绝症之首,这是运动神经元病中的一种,患者逐渐出现 全身肌肉萎缩、无法说话、无法吞咽、无法呼吸,直至死亡,迄今为止,渐冻症病因不明,且无法治 愈。 ...
大医生|樊东升:与万名“渐冻人”并肩寻药
经济观察报· 2025-09-05 09:06
Core Viewpoint - The article highlights the significant contributions of Dr. Fan Dongsheng in the research and treatment of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease, emphasizing the hope brought by new drug trials and the importance of patient involvement in clinical research [1][2][4]. Group 1: Dr. Fan Dongsheng's Contributions - Dr. Fan Dongsheng is a leading expert in ALS research in China, having treated over 10,000 patients and established the world's largest ALS patient database with over 5,000 entries [2][3]. - He emphasizes the importance of providing hope to patients while being honest about their conditions, often reassuring them about their overall health status [3][4]. - Dr. Fan has been involved in the development of new drug trials, which have become a source of hope for patients who have exhausted other treatment options [5][8]. Group 2: New Drug Trials and Research - Recently, Dr. Fan has led multiple clinical trials for new ALS drugs at Peking University Third Hospital, including a drug developed in collaboration with Tsinghua University, which received approval for clinical trials in August 2023 [8][9]. - There are currently nearly 10 ALS drug trials underway at the hospital, including both international and domestic drug development efforts [10][11]. - The article notes that ALS drug development is particularly challenging, with only a few drugs successfully reaching the market in the past decades, highlighting the need for continued research and investment in this area [10][11]. Group 3: Patient Involvement and Data Collection - Dr. Fan has established a new data platform that allows ALS patients to upload their health information, significantly increasing the amount of real-time data available for research [21][24]. - The platform has collected over ten thousand data points, doubling the previous data collected over two decades, which aids in the rapid recruitment of patients for clinical trials [21][24]. - The article emphasizes the importance of precise patient selection for clinical trials, as different ALS subtypes may respond differently to treatments, thus improving the success rates of trials [12][14]. Group 4: Community and Advocacy - Many of Dr. Fan's patients have become advocates for ALS awareness and research, contributing to community support and fundraising efforts [17][20]. - The article highlights the role of patients like Liu Jijun and Cai Lei in promoting ALS research and support networks, showcasing the impact of patient-led initiatives [17][20]. - Dr. Fan's approach to patient care includes not only medical treatment but also fostering a supportive community among ALS patients, which is crucial for their mental and emotional well-being [16][18].
大医晓病 | 樊东升:早诊断、早治疗对渐冻症患者至关重要
Jing Ji Guan Cha Wang· 2025-09-05 08:45
Core Insights - Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig's disease, is characterized by the gradual loss of motor neurons in the brain and spinal cord, leading to muscle atrophy and loss of motor function [2][3] - ALS is classified as a neurodegenerative disease, similar to Alzheimer's and Parkinson's, and is currently considered incurable, with treatment focused on stabilizing or delaying the progression of the disease [2][3] Drug Availability - Currently, there are "two and a half" drugs available for ALS treatment: Riluzole from Sanofi, Edaravone from Mitsubishi Pharma, and Tofersen from Biogen, which is effective for only 2% of patients [4] Patient Symptoms and Disease Progression - Early symptoms of ALS may include insomnia, anxiety, and weight loss, with later stages leading to speech difficulties, swallowing issues, and abnormal bowel and bladder function [5][9] - The disease progresses rapidly, with many patients having a life expectancy of around five years post-diagnosis [4] Quality of Life Improvement - Early diagnosis and treatment are crucial, as the average delay in diagnosis has historically been 10-11 months, but awareness is improving, allowing for earlier intervention [6] - Early diagnosis is also vital for new drug development, as clinical trials often require early-stage patients [6] Disease Mechanisms and Triggers - The exact causes of ALS remain unclear, but potential mechanisms include excessive neuronal excitation, insufficient energy metabolism, and oxidative stress [9][10] - Factors such as weight loss, high-altitude exposure, and physical or mental stress can accelerate the onset of ALS symptoms [9][10] Misconceptions and Myths - There is a condition known as "pseudo-ALS" that mimics ALS but has a clear cause and can be treated effectively, with about 5% of suspected ALS cases falling into this category [11] - The placebo effect is a significant concern in ALS treatment, as patients may perceive improvements that are not clinically substantiated [11] Technological Advancements - Brain-computer interfaces could significantly enhance the quality of life for ALS patients by enabling communication and interaction with the outside world, especially in advanced stages of the disease [12]
樊东升:早诊断、早治疗对渐冻症患者至关重要
Jing Ji Guan Cha Wang· 2025-09-05 08:35
Core Insights - Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig's disease, is characterized by the gradual loss of motor neurons in the brain and spinal cord, leading to muscle atrophy and loss of motor function, making it a neurodegenerative disease that is irreversible [1][2] Group 1: Disease Characteristics - ALS is often referred to as the "most cruel rare disease" because, unlike other neurodegenerative diseases such as Alzheimer's, patients retain cognitive and emotional functions while losing physical abilities, resulting in profound psychological pain [2] - The progression of ALS is rapid, with many patients having a life expectancy of only around five years post-diagnosis, making it more aggressive compared to other neurodegenerative diseases [3] Group 2: Available Treatments - Currently, there are limited treatment options for ALS, including riluzole from Sanofi, edaravone from Mitsubishi Pharma, and tofersen injection from Biogen, which is effective for only 2% of patients [3] Group 3: Patient Symptoms and Diagnosis - Early symptoms of ALS may include non-motor symptoms such as insomnia, anxiety, and weight loss, which can precede the onset of motor symptoms [4] - Early diagnosis is crucial, as it allows for timely treatment and can significantly extend survival rates; the average delay in diagnosis has decreased from 10-11 months to as little as 3-6 months due to increased awareness [4] Group 4: Disease Mechanisms and Risk Factors - The exact causes of ALS remain unclear, but several mechanisms have been proposed, including excessive neuronal excitation, insufficient energy metabolism, and oxidative stress [5][6] - Factors such as weight loss, high-altitude exposure, and physical or mental stress can exacerbate the condition, with studies indicating that rapid weight loss correlates with faster disease progression [6][7] Group 5: Misconceptions and Myths - There exists a condition known as "pseudo-ALS" or "ALS-like syndrome," which can be misdiagnosed as ALS but has identifiable causes and can be treated effectively [8] - The placebo effect is a significant concern in ALS treatment, as patients may perceive improvements that are not clinically substantiated [8] Group 6: Future Technologies - Brain-computer interfaces hold promise for improving the quality of life for ALS patients, particularly in late stages where communication becomes severely limited, potentially allowing patients to express thoughts and maintain a connection with the outside world [9]
遇见你丨“副驾驶坐的是我的家属” 这辆特殊的网约车满载着爱
Yang Shi Wang· 2025-08-04 22:07
Core Viewpoint - The story highlights the resilience and love of a couple, Wang Jie and Cui Wenjun, as they navigate life after Cui's diagnosis of ALS, with Wang becoming a ride-hailing driver to support the family while caring for her husband [1][19][39] Group 1: Personal Background - Wang Jie, 52, became a ride-hailing driver in March 2025 after her husband, Cui Wenjun, was diagnosed with ALS [1][19] - The couple had previously purchased an electric vehicle in 2019, with Cui as the primary driver until his health declined [7][19] - Cui's condition worsened over time, leading to a loss of mobility and independence, which prompted Wang to take over driving duties [9][15] Group 2: Daily Life and Adaptations - Wang Jie drives with her husband in the passenger seat, who provides navigation and support during rides [7][19] - They have created a sign in the car explaining Cui's condition to passengers, which has received positive responses [1][2][4] - Wang Jie and Cui have encountered many kind passengers who offer encouragement and support, enhancing their daily experience [22][24] Group 3: Community Support - The ride-hailing platform has made adjustments to better accommodate Wang Jie’s situation, including training and optimizing the app for her needs [26][30] - Local medical institutions have also provided assistance, including free monthly medical services for Cui [22][24] - The community has shown warmth and kindness, with passengers and organizations offering help and donations [22][32] Group 4: Future Aspirations - Wang Jie expresses a desire to continue driving and exploring new places with her husband, viewing their ride-hailing work as a new beginning [38][39] - The couple aims to maintain hope and positivity despite the challenges posed by Cui's illness, emphasizing the importance of family and support [34][39]
蔡磊妻子:我们会得罪很多人,所以有心理准备
Zhong Guo Xin Wen Wang· 2025-06-21 11:43
Core Viewpoint - The founders of the "Breaking the Ice Station" express their commitment to their mission despite facing criticism and challenges, particularly in their efforts to support research on ALS (Amyotrophic Lateral Sclerosis) [1][5]. Group 1: Company Development - "Breaking the Ice Station" has rapidly grown to over 5 million followers within three years, expanding its product categories from food to jewelry [2]. - The company operates in a highly competitive environment, where survival is a daily challenge, and only the top players thrive [2][3]. - The live streaming platform has diversified its offerings, including niche products like handmade cloisonné, despite the challenges of selling such items [3]. Group 2: Market Strategy - The entry into the jewelry market is driven by both market demand and personal interest, although it poses significant challenges in quality control and consumer trust [3][4]. - The founders acknowledge the potential backlash from competitors in the jewelry sector, indicating a readiness to face criticism [4]. Group 3: Research and Innovation - The team has begun utilizing AI technology to enhance research efficiency, significantly increasing their ability to analyze literature related to ALS [5]. - The company has positioned itself as a global center for ALS research, emphasizing collaboration and support for others in the field [5].