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。 ...

Core Viewpoint - The article highlights the inspiring journey of Cai Lei, who, despite being diagnosed with ALS (Amyotrophic Lateral Sclerosis), has made significant contributions to the awareness and research of the disease, becoming a symbol of resilience for many patients [2][3]. Group 1: Recognition and Achievements - Cai Lei was awarded the title of "National Self-Reliance Model" during the 7th National Self-Reliance Model and Disability Assistance Commendation Conference [1] - He expressed immense gratitude for the recognition, stating it serves as encouragement not only for him but also for the countless individuals suffering from rare diseases like ALS [2] - Cai Lei has established the "Gradual Recovery Mutual Aid Home" and a pathological research gene sample bank for ALS patients, linking over ten thousand patients [2][3] Group 2: Financial Contributions and Research Impact - In 2024, Cai Lei invested over 40 million yuan in research, with more than 30 million yuan allocated to external research donations [3] - Significant breakthroughs have been made in treating the two most common gene types among ALS patients, with ten drug pipelines entering clinical trial phases [3] Group 3: Personal Struggles and Family Support - Cai Lei's condition has deteriorated, making independent movement and clear speech difficult; however, he continues to engage with his family and the public through AI technology [3][4] - His son visited him, showcasing a touching moment of interaction, highlighting the importance of family support during challenging times [7]