2月16日，"蔡磊破冰驿站"账号发布了一则视频，蔡磊、段睿、"小菜籽"一家三口为大家送新年祝福。 小菜籽逗趣地说道"马年祝大家吃蛋糕"，并将手搭在蔡磊的右手上，蔡磊戴着红围脖出镜，对着妻儿露出笑容。 据红星新闻，2月15日，蔡磊在2026年春节到来之际，用眼控仪敲下愿望："梦想即将成真，继续一马当先，坚持龙马精神，希望马到功成！" 正因如此，蔡磊希望通过视频中渐冻症患者的治疗案例，给更多病友以希望。他表示，视频里是渐冻症患者生命被拯救的真实记录，他们之中有人 已经回归了健康生活，摆脱了死神。"这是渐愈互助之家平台数年来与中国科学家合作推进SOD1等基因类型渐冻症的治疗药物，实现了领先世界的 临床前和临床疗效，这归功于全世界科学家、药企、医生、患者的共同努力。" 蔡磊在新年信中介绍道，2025年是科研工作到临床转化实现多维突破的一年。团队推动了近百个渐冻症科研合作项目，联动多家创新药企与顶尖医 疗机构，助力15个药物管线及治疗技术实现临床转化突破。 此外，蔡磊表示，团队正积极关注脑机接口、具身智能等前沿科技力量，并与多家国内机器人企业接洽，期待可以研发适用于夜间值守、辅助翻 身、安全监护等场景的护理机器人，用以 ...

"为了生命，决不投降。"蔡磊在新年信的最后再次表达了自己的决心。 正因如此，蔡磊希望通过视频中渐冻症患者的治疗案例，给更多病友以希望。他表示，视频里是渐冻症患者生命被拯救的真实记录，他们之中有人 已经回归了健康生活，摆脱了死神。"这是渐愈互助之家平台数年来与中国科学家合作推进SOD1等基因类型渐冻症的治疗药物，实现了领先世界的 临床前和临床疗效，这归功于全世界科学家、药企、医生、患者的共同努力。" 蔡磊在新年信中介绍道，2025年是科研工作到临床转化实现多维突破的一年。团队推动了近百个渐冻症科研合作项目，联动多家创新药企与顶尖医 疗机构，助力15个药物管线及治疗技术实现临床转化突破。 此外，蔡磊表示，团队正积极关注脑机接口、具身智能等前沿科技力量，并与多家国内机器人企业接洽，期待可以研发适用于夜间值守、辅助翻 身、安全监护等场景的护理机器人，用以减轻家庭在人力与经济上的双重负担。 南都记者留意到，蔡磊在新年信中还感谢了妻子段睿的付出与奉献，感谢所有病友及家属的理解与支持，感谢社会各界爱心人士。他透露，仅过去 24个月科研投入超过8000万元，其中对外科研捐款约6000万元，六年来总投入已超一亿元。 2月16日 ...

2月16日，"蔡磊破冰驿站"账号发布了一则视频，蔡磊、段睿、"小菜籽"一家三口为大家送新年祝福。 小菜籽逗趣地说道"马年祝大家吃蛋糕"，并将手搭在蔡磊的右手上，蔡磊戴着红围脖出镜，对着妻儿露 出笑容。南都N视频此前报道，今年1月，蔡磊介绍道，2025年是科研工作到临床转化实现多维突破的 一年，团队推动了近百个渐冻症科研合作项目。 正因如此，蔡磊希望通过视频中渐冻症患者的治疗案例，给更多病友以希望。他表示，视频里是渐冻症 患者生命被拯救的真实记录，他们之中有人已经回归了健康生活，摆脱了死神。"这是渐愈互助之家平 台数年来与中国科学家合作推进SOD1等基因类型渐冻症的治疗药物，实现了领先世界的临床前和临床 疗效，这归功于全世界科学家、药企、医生、患者的共同努力。" 蔡磊在新年信中介绍道，2025年是科研工作到临床转化实现多维突破的一年。团队推动了近百个渐冻症 科研合作项目，联动多家创新药企与顶尖医疗机构，助力15个药物管线及治疗技术实现临床转化突破。 此外，蔡磊表示，团队正积极关注脑机接口、具身智能等前沿科技力量，并与多家国内机器人企业接 洽，期待可以研发适用于夜间值守、辅助翻身、安全监护等场景的护理机器人，用以 ...

2026年年初，蔡磊的ALSFRS-R评分（渐冻症功能评分）已降至个位数。这意味着，他身体的大多数功 能正在接近刻度盘的尽头。 被诊断渐冻症6年来，他的身体被一寸寸冻结。四肢和躯干肌肉的力量早就丧失了，如今，转头也需要 护工帮助。食物要打成糊状，再过两遍细筛，才能适应他微弱的吞咽功能。 只有眼睛和大脑，还顽强地工作着。他靠眼球的转动和外界沟通，每天用眼控仪工作超过10个小时。 任何病菌都可能致命。过去一年，蔡磊下了一次楼，坐在轮椅上，被护工裹得严严实实。 绝大多数时候，他坐在卧室窗前的电脑前。靠眼控仪指挥摄像头与访客"对视"；助理借助一面半身镜， 通过光的折射与他眼神交流。屋里的光线要稳定，窗帘昼夜拉着。 每两小时，蔡磊就需要由4位护工将他"搬"回床上休息。躺下后，他的呼吸完全依赖一根插入鼻腔的塑 料管路——一台代替他已经瘫痪的呼吸肌工作的呼吸机。等待"上机"的几十秒，他脸上浮现出极度痛苦 的面容。 1月26日，渐冻 症终末期的蔡磊日常生活全依赖护工照护。实习生 徐鹤闻/摄 "天壤之别" 在与渐冻症抗争、推动科研攻关的第六个年头，蔡磊明显感觉到，团队中不少同事陷入悲观情绪。"家 人也更加痛苦，不知道哪天就会失 ...

本文转自【央视新闻微信公众号】； "渐冻症必然被攻克！这只是时间问题。" 1月1日，渐冻症患者蔡磊借助眼控仪"写"下了一封致渐冻症病友的公开信，同时附上了数位渐冻症患者 的自拍视频，其中有人的健康状态已经得到改善。 △渐冻症患者的自拍视频（来源：蔡磊微博） 蔡磊介绍，这是渐愈互助之家平台数年来与中国科学家合作推进SOD1等基因类型渐冻症的治疗药物， 实现了领先世界的临床前和临床疗效。这些患者只需要几次使用，每次几分钟，就可能产生改写生命的 颠覆性效果。 "对他们来说，渐冻症这个200年的恶魔已被'秒杀'！几年前，这一切不可能，甚至不敢想，现在已是现 实。渐冻症的历史其实已被改写。"蔡磊写道。 根据身体功能评分（ALSFRS-R），与渐冻症抗争6年的蔡磊已从总分48分降至个位数，进入疾病的终 末期。蔡磊描述，自己的大脑无比清醒看着身体像磁铁一样被禁锢的动弹不得，时刻疼痛酸楚、麻木难 忍、窒息憋闷，却无法呼喊表达，比植物人还要残酷，连呼吸都成为一种奢望。 "目前全世界依然没有看到可以阻止病情或逆转改善的药物和办法（基因类型除外），我们似乎有痛苦 和悲观的充分理由。"但蔡磊表示了充分的自信，"这是一个科技爆发的时代 ...

1月1日，渐冻症患者、京东前副总裁蔡磊发布致所有渐冻症病友的公开信。 00:33 蔡磊表示，近期自己的身体状况受到了很多关注，身体功能评分（ALSFRS-R）已从总分48分降至个位 数，进入疾病的终末期，非常艰难，以至于很多病友甚至身边团队也丧失了很大信心，不少同事陷入悲 观情绪。 "我的家人也更加痛苦，不知道哪天就会失去我。确实，渐冻症无比残酷，四肢瘫痪也只是噩梦的开始 而已，当它侵蚀到颈部、喉部、头部，带来语言丧失、吞咽困难、呼吸衰竭，那才是真正的恐怖。大脑 无比清醒看着身体像磁铁一样被禁锢的动弹不得，时刻疼痛酸楚、麻木难忍、窒息憋闷，却无法呼喊表 达，比植物人还要残酷，连呼吸都成为一种奢望。"蔡磊表示，目前全世界依然没有看到可以阻止病情 或逆转改善的药物和办法。 尽管如此，对于攻克渐冻症，蔡磊表示充分的信心和希望，他以渐冻症患者生命被拯救的真实记录举 例，目前渐愈互助之家平台数年来与中国科学家合作推进SOD1等基因类型渐冻症的治疗药物已经实现 领先世界的临床前和临床疗效，归功于全世界科学家、药企、医生、患者的共同努力，也离不开国家开 明政策和社会爱心人士的支持。 "我依然坚持每天阅读数十个病友群的信息， ...

Core Viewpoint - The article emphasizes the significant advancements in the treatment of Amyotrophic Lateral Sclerosis (ALS) and the hope for future breakthroughs in medical science, particularly through collaboration among scientists, pharmaceutical companies, and patients [1][2][3]. Group 1: Treatment Advancements - The collaboration with Chinese scientists has led to the development of treatment drugs for SOD1 gene-type ALS, achieving world-leading clinical efficacy [1][2]. - Patients have reported dramatic improvements in their conditions, with some experiencing a 95% reduction in NFL (neurofilament light chain) levels, indicating significant recovery [1][8]. - The treatment has allowed patients to regain mobility and functionality, with some able to perform physical activities they could not do before [1][8]. Group 2: Research and Development - In 2025, the company facilitated nearly 100 ALS research projects in collaboration with over 60 top research teams and 50 biotech companies, resulting in breakthroughs in 15 drug pipelines and treatment technologies [11]. - The use of AI has accelerated research efforts, enabling the analysis of nearly 40,000 ALS research papers and hundreds of drug evaluations, significantly increasing research efficiency [11]. - The patient community has grown to over 18,000 registered individuals, providing a substantial database for real-world data research and clinical studies [11]. Group 3: Innovation in Care and Cost Reduction - A new care system for ALS patients has been established, focusing on comprehensive management to improve care quality and reduce costs [11][12]. - Collaborations with companies like Haier and JD Health have led to the development of customized, high-quality non-invasive ventilators at an 80% reduced cost for patients [11][12]. - The company has invested over 80 million yuan in research over the past 24 months, with a total investment exceeding 100 million yuan over six years, highlighting a commitment to advancing ALS treatment [11][12]. Group 4: Future Outlook - The year 2026 is anticipated to bring significant breakthroughs, with ongoing efforts to enhance AI-driven research and develop innovative care solutions [12]. - The company is exploring partnerships with robotics firms to create nursing robots that can assist with patient care, aiming to alleviate the burden on families [12]. - The overarching message is one of hope and determination, emphasizing that ALS can be conquered through collective efforts and scientific advancements [13].

Core Viewpoint - The innovative drug Tofersen injection for treating SOD1-ALS has officially launched in China, marking a significant advancement in the treatment of this rare and fatal neurological disease [1][2]. Group 1: Drug and Treatment Details - Tofersen injection is the first disease-modifying treatment for SOD1-ALS, providing a new hope for patients suffering from this condition [1][2]. - The drug is an antisense oligonucleotide (ASO) that reduces the synthesis of the toxic SOD1 protein, thereby alleviating damage to motor neurons and slowing disease progression [2][3]. - The drug was approved in September 2022 for adult patients with SOD1 gene mutations, addressing a significant unmet need in the treatment of ALS [2][3]. Group 2: Patient and Clinical Insights - The average onset age for SOD1-ALS patients is around 50 years, with a typical presentation of lower limb onset and simultaneous damage to upper and lower motor neurons [3]. - There is an urgent demand for targeted therapies among patients due to the fatal nature of the disease [3]. - The importance of genetic testing for all ALS patients, including those with SOD1 mutations, is emphasized for accurate diagnosis and treatment [2][3]. Group 3: Advocacy and Future Directions - Experts call for the standardization of genetic testing and treatment protocols to ensure timely access to this breakthrough therapy for eligible patients [3]. - There is a collective appeal from advocacy groups to raise awareness and improve access to innovative therapies for rare disease populations [3].

Core Viewpoint - The article discusses the promising results of a clinical trial that tested low-dose IL-2 as an add-on therapy to Riluzole for treating Amyotrophic Lateral Sclerosis (ALS), indicating that modifying the immune system may effectively slow disease progression and reduce mortality risk [2][4][9]. Group 1: Disease Overview - Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease, is a rare neurodegenerative disorder characterized by the progressive loss of motor neurons, leading to severe disability and a median survival time of only 2-3 years from symptom onset [1]. - Current treatment options are limited, with Riluzole being the only FDA-approved drug that can extend survival by only a few months, highlighting the urgent need for more effective therapies [1]. Group 2: Clinical Trial Details - A phase 2b, double-blind, randomized, placebo-controlled trial was conducted to evaluate the efficacy and safety of low-dose IL-2 as an adjunct therapy to Riluzole in ALS patients [2][4][5]. - The trial included participants aged 18-76 with a symptom duration of ≤24 months and a forced vital capacity of ≥70%, who had not previously received Riluzole treatment [5]. Group 3: Trial Results - Out of 304 screened ALS patients, 220 met the randomization criteria after a 12-18 week Riluzole monotherapy period, with a 62% male and 38% female distribution [6]. - The primary endpoint analysis indicated a 19% reduction in mortality risk for the IL-2 LD group, although this was not statistically significant; however, a subsequent adjusted analysis showed a significant 68% reduction in mortality risk [6][7]. - The treatment was found to be safe, with significant increases in Treg cells and decreases in plasma CCL2 levels observed at all time points [6][8]. Group 4: Implications for Treatment - The findings suggest that low-dose IL-2 could be considered a safe and well-tolerated treatment option for ALS, enhancing the effects of Riluzole and potentially improving patient survival rates [2][9].