近日，一则‘渐冻症患者家属含泪求助蔡磊’的视频在网络上引发广泛关注。视频中，一位患者家属情绪崩溃，恳请曾为京东副总裁、现投身渐冻症科研与公益的蔡磊伸出援手。渐冻症（肌萎缩侧索硬化症，ALS）是一种目前尚无治愈手段的神经退行性疾病，患者会逐渐丧失运动能力，最终影响呼吸功能。由于治疗费用高昂、照护压力巨大，许多家庭陷入经济与精神的双重困境。蔡磊本人于2019年确诊ALS后，毅然辞去高管职务，全力推动中国ALS科研、药物研发和患者互助体系建设。他发起的‘破冰驿站’等项目，已成为国内ALS患者重要的支持平台。此次家属的求助，不仅反映了普通患者家庭的无助与挣扎，也凸显了社会对罕见病群体关注和支持的迫切需求。公众呼吁更多资源向罕见病倾斜，也希望像蔡磊这样的先行者能带动更多力量加入ALS抗击行列。
Recently, a video titled ‘Family Member of an ALS Patient Tearfully Appeals to Cai Lei for Help’ has drawn widespread attention online. In the video, a distressed family member emotionally pleads with Cai Lei—a former JD.com vice president now dedicated to ALS research and advocacy—to offer assistance. Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, is a currently incurable neurodegenerative disorder that progressively robs patients of motor function, eventually impairing breathing. Due to exorbitant treatment costs and immense caregiving burdens, many families face severe financial and emotional hardship. Diagnosed with ALS in 2019, Cai Lei resigned from his executive role to fully commit to advancing ALS research, drug development, and patient support systems in China. Initiatives he launched, such as the ‘Icebreaker Station,’ have become vital resources for ALS patients nationwide. This heartfelt appeal not only highlights the desperation of ordinary families affected by ALS but also underscores the urgent need for greater societal awareness and support for rare disease communities. The public is calling for increased allocation of resources to rare diseases and hopes that pioneers like Cai Lei will inspire more people to join the fight against ALS.
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