中国新闻社：发起为生命呼吸挑战

帝企鹅 实名认证

12月23日，据媒体消息——我国首家罕见病爱心会(公益法人组织)在深圳现场为肌营养不良症协会的群体发起“为生命呼吸挑战”公益活动。工作人员在旁边监督及计时，5位广东的青年志愿者热心参与并顺利完成了这个活动。该活动可体验呼吸极限，呼吁理解和帮助肌营养不良症肢体萎缩无力群体！志愿参与者可锻炼肺活量有益健康，并提高保护空气质量意识！ 　　活动规则：接受挑战者要用手抚住鼻子憋气60至90秒内，过程口也不能张开，否则是挑战失败，要向发起方罕见病爱心会的网站捐赠100元给肌营养不良症群体。每个挑战者之后还可任意点名挑战5人接力，也可团体或小组比赛计时胜负，团队比赛中以计时最少的一组为失败单元，由挑战失败小组捐赠100元。参与者可自愿把活动的相片或录像上传到网上@罕见病爱心会，本活动将持续帮助肌营养不良症群体…… 　　科普内容(中国首家肌营养不良症协会)提供：肌营养不良症也是肌痿症，部分类型患者也会造成呼吸肌萎缩无力呼吸，肌营养不良症形容肢体枯萎人。肌营养不良症1大类是进行性肌营养不良症，2小类分别是先天性肌营养不良和强直性肌营养不良症，重点9种类型，肌营养不良症总发病率约2000分之1。 　　全国首家罕见病爱心会一周年来免费服务帮助最弱势群体万人次，公益诊疗救助罕见病人1300个，受到国内群众好评，帮助群众价值过百万元人民币。 　　2014年罕见病爱心会还被中华人民共和国民政部、国务院国有资产监督管理委员会等单位主办的中国慈展会评为“优秀参展机构”称号。 　　此外，罕见病爱心2013年还建立中国首个罕见病群体免费公益网上服务平台，最近还将近20万元人民币用于做帮助患者及其家人的群体公益项目。        中国新闻社  http://www.hb.chinanews.com/news/zxzl/2014/1226/8681.html

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