{"id":1798,"date":"2018-04-15T12:03:25","date_gmt":"2018-04-15T17:03:25","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1798"},"modified":"2018-04-15T12:03:25","modified_gmt":"2018-04-15T17:03:25","slug":"coalition-to-cure-calpain-3","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/lgmd2a\/2018\/04\/15\/coalition-to-cure-calpain-3\/","title":{"rendered":"\u7ec4\u7ec7\uff1a\u6cbb\u7597 Calpain 3 \u8054\u76df"},"content":{"rendered":"<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27960%27%20height%3D%27720%27%20viewBox%3D%270%200%20960%20720%27%3E%3Crect%20width%3D%27960%27%20height%3D%27720%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2019\/10\/Coalition-to-Cure-Calpain-3-v2.png\" alt=\"\" class=\"lazyload wp-image-2874\"\/><\/figure>\n\n\n<p><strong>\u7ec4\u7ec7\u540d\u79f0<\/strong>:         \u6cbb\u7597\u9499\u86cb\u767d\u9176\u8054\u76df 3<\/p>\n<p><strong>\u7f51\u7ad9\uff1a<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <a href=\"http:\/\/www.curecalpain3.org\/\">CureCalpain3.org<\/a><\/p>\n<p><strong>FACEBOOK\uff1a\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><a href=\"https:\/\/www.facebook.com\/CureCalpain3\/\">\u6cbb\u7597\u9499\u86cb\u767d\u9176\u8054\u76df 3\uff1a\u6218\u80dc LGMD2A\/\u9499\u86cb\u767d\u9176\u75c5<\/a><\/p>\n<p><strong>\u63a8\u7279\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0<\/strong><a href=\"https:\/\/twitter.com\/curecalpain3\">@CureCalpain3<\/a><\/p>\n<p>\u00a0<\/p>\n<p><strong>\u8d35\u7ec4\u7ec7\u4fa7\u91cd\u4e8e\u54ea\u79cd lgmd \u5b50\u7c7b\u578b\uff1a\u00a0 <\/strong><\/p>\n<p>LGMD2A, Calpainopathy \u7684\u4e00\u79cd\u5f62\u5f0f<\/p>\n<p><strong>\u5982\u679c\u60a8\u4e13\u6ce8\u4e8e\u67d0\u4e00\u4e9a\u578b\uff0c\u662f\u5426\u6709\u767b\u8bb0\u5904\uff0c\u60a3\u8005\u5982\u4f55\u52a0\u5165\uff1f <\/strong><\/p>\n<p>\u662f\u7684\uff0c\u6211\u4eec\u7ef4\u62a4\u7740\u5168\u7403 LGMD2A \u60a3\u8005\u6ce8\u518c\u4e2d\u5fc3\u3002  \u6ce8\u518c\u975e\u5e38\u7b80\u5355 <a href=\"http:\/\/www.lgmd2a.org\">www.lgmd2a.org<\/a><\/p>\n<p><strong>\u8d35\u7ec4\u7ec7\u662f\u975e\u8425\u5229\u7ec4\u7ec7\u5417\uff1f\u5982\u679c\u662f\uff0c\u662f\u4ec0\u4e48\u7c7b\u578b\uff1f\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>\u662f\uff0c\u6211\u4eec\u662f\u4e00\u5bb6\u603b\u90e8\u8bbe\u5728\u7f8e\u56fd\u7684 501 (c)(3) \u514d\u7a0e\u516c\u5171\u6148\u5584\u673a\u6784<\/p>\n<p><strong>\u521b\u5efa\u8d35\u7ec4\u7ec7\u7684\u7075\u611f\u6765\u6e90<\/strong>:<\/p>\n<p>\u6cbb\u7597\u9499\u86cb\u767d\u9176 3 \u8054\u76df (Coalition to Cure Calpain 3\uff0cC3) \u6210\u7acb\u4e8e 2010 \u5e74\uff0c\u65e8\u5728\u8d44\u52a9\u7814\u7a76\u5de5\u4f5c\uff0c\u91cd\u70b9\u662f\u4e86\u89e3\u9499\u86cb\u767d\u9176\u75c5 LGMD2A \u7684\u751f\u7269\u5b66\u7279\u6027\u5e76\u627e\u5230\u6cbb\u7597\u65b9\u6cd5\u3002\u8be5\u7ec4\u7ec7\u662f\u7531\u60a3\u8005\u53ca\u5176\u5bb6\u5c5e\u521b\u7acb\u7684\uff0c\u4ed6\u4eec\u5bf9\u8fd9\u79cd\u75be\u75c5\u7f3a\u4e4f\u4e86\u89e3\u4ee5\u53ca\u7814\u7a76\u6210\u679c\u751a\u5c11\u611f\u5230\u6cae\u4e27\u3002\u5bf9\u4e8e\u6211\u4eec\u4e2d\u7684\u4e00\u4e9b\u4eba\u6765\u8bf4\uff0c\u5373\u4f7f\u662f\u83b7\u5f97\u5177\u4f53\u7684\u8bca\u65ad\u4e5f\u9700\u8981\u82b1\u8d39\u6570\u5341\u5e74\u7684\u65f6\u95f4\u3002  \u6211\u4eec\u5e0c\u671b\u9f13\u52b1\u79d1\u5b66\u5bb6\u3001LGMD2A \u60a3\u8005\u3001\u4ed6\u4eec\u7684\u5bb6\u4eba\u548c\u670b\u53cb\u4ee5\u53ca\u5e7f\u5927\u793e\u533a\u5f00\u5c55\u5408\u4f5c\uff0c\u7ed3\u675f\u8fd9\u79cd\u7814\u7a76\u4e0d\u8db3\u3001\u8d44\u91d1\u4e0d\u8db3\u7684 \"\u5b64\u513f \"\u75be\u75c5\u3002<\/p>\n<p><strong>\u8d35\u7ec4\u7ec7\u7684\u4f7f\u547d\u662f\u4ec0\u4e48\uff1f<\/strong><\/p>\n<p>C3 \u81f4\u529b\u4e8e\u6cbb\u7597\u5e76\u6700\u7ec8\u6cbb\u6108 2A \u578b\u80a2\u675f\u808c\u8425\u517b\u4e0d\u826f\u75c7 (LGMD2A)\uff0c\u8fd9\u662f\u4e00\u79cd Calpainopathy\u3002\u6211\u4eec\u7684\u4f7f\u547d\u662f\u8d44\u52a9\u9ad8\u6f5c\u529b\u7814\u7a76\u548c\u4e34\u5e8a\u8bd5\u9a8c\uff0c\u540c\u65f6\u5411\u5168\u7403\u793e\u533a\u5ba3\u4f20\u8fd9\u79cd\u75be\u75c5\u3002<\/p>\n<p><strong>\u8d35\u7ec4\u7ec7\u63d0\u4f9b\u54ea\u4e9b\u670d\u52a1\uff1f<\/strong><\/p>\n<p>- \u8d44\u52a9\u4ee5 LGMD2A\/\u9499\u78f7\u4ee3\u8c22\u75c5\u4e3a\u91cd\u70b9\u7684\u7814\u7a76<\/p>\n<p>- \u7ef4\u62a4\u5168\u7403 LGMD2A\/Calpainopathy \u60a3\u8005\u767b\u8bb0\u518c<\/p>\n<p>- \u901a\u8fc7\u6211\u4eec\u7684\u7f51\u7ad9\u3001\u793e\u4ea4\u5a92\u4f53\u3001\u53c2\u52a0\u79d1\u5b66\u4f1a\u8bae\u548c\u7535\u5b50\u90ae\u4ef6\u4ea4\u6d41\uff0c\u5411\u5168\u7403\u793e\u533a\uff08\u5305\u62ec\u79d1\u5b66\u754c\u3001\u60a3\u8005\u3001\u5bb6\u5c5e\u548c\u516c\u4f17\uff09\u5ba3\u4f20\u8fd9\u4e00\u75be\u75c5<\/p>\n<p>- \u5728 Facebook \u4e0a\u4e3a\u60a3\u8005\u53ca\u5176\u5bb6\u5c5e\u63d0\u4f9b\u652f\u6301\u8bba\u575b (<a href=\"\/zh\/carol@curecalpain3.org\/\">\u7535\u5b50\u90ae\u4ef6 C3 \u60a3\u8005\u5916\u8054\u4e3b\u4efb\u5361\u7f57\u5c14-\u4e9a\u4f2f\u62c9\u7f55\uff08Carol Abraham<\/a> \u52a0\u5165)<\/p>\n<p><strong>\u8d35\u7ec4\u7ec7\u6700\u5f15\u4ee5\u4e3a\u8c6a\u7684\u662f\u4ec0\u4e48\uff1f<\/strong><\/p>\n<p>\u6700\u4ee4\u6211\u4eec\u611f\u5230\u81ea\u8c6a\u7684\u662f\uff0c\u6211\u4eec\u80fd\u591f\u5438\u5f15\u548c\u652f\u6301\u9ad8\u6c34\u5e73\u7684\u79d1\u5b66\u5bb6\u6765\u63a8\u52a8\u9499\u86cb\u767d\u9176\u75c5\u7684\u7814\u7a76\u3002\u81ea2010\u5e74\u6210\u7acb\u4ee5\u6765\uff0cMelissa Spencer\u535a\u58eb\u4e00\u76f4\u9886\u5bfc\u7740\u6211\u4eec\u7684\u79d1\u5b66\u987e\u95ee\u59d4\u5458\u4f1a\uff0c\u4e0eKevin Campbell\u535a\u58eb\u3001Eric Hoffman\u535a\u58eb\u548cLou Kunkel\u535a\u58eb\u5e76\u80a9\u5de5\u4f5c\u3002\u8a79\u59ae\u5f17-\u5229\u7ef4\u535a\u58eb\u4e8e2016\u5e74\u52a0\u5165\u6211\u4eec\uff0c\u6210\u4e3a\u9996\u4f4dC3\u79d1\u5b66\u4e3b\u4efb\uff0c\u5e76\u5c06\u6211\u4eec\u8d44\u52a9\u7684\u7814\u7a76\u9879\u76ee\u6570\u91cf\u589e\u52a0\u4e86\u4e00\u500d\u591a\u3002\u6211\u4eec\u7684\u57fa\u91d1\u4f1a\u6700\u521d\u53ea\u662f\u6211\u4eec\u8bd5\u56fe\u6539\u53d8\u73b0\u72b6\u7684\u4e00\u4e2a\u60f3\u6cd5\uff0c\u5982\u4eca\u5df2\u4e3a\u7c73\u6b47\u5c14-\u5361\u6d1b\u65af\uff08Michele Calos\uff09\u3001\u5362-\u6606\u514b\u5c14\uff08Lou Kunkel\uff09\u3001\u51ef\u601d\u7433-\u5362\u8328\uff08Cathleen Lutz\uff09\u3001\u4e3d\u5854-\u4f69\u6797\u76d6\u7f57\uff08Rita Perlingeiro\uff09\u3001\u4f0a\u838e\u8d1d\u5c14-\u7406\u67e5\u5fb7\uff08Isabelle Richard\uff09\u3001\u6885\u4e3d\u838e-\u65af\u5bbe\u585e\uff08Melissa Spencer\uff09\u3001\u6c83\u5c14\u514b-\u65af\u7279\u52b3\u666e\uff08Volker Straub\uff09\u7b49\u9876\u5c16\u79d1\u5b66\u5bb6\u5f00\u5c55\u7684\u9499\u86cb\u767d\u86cb\u767d\u9176\u75c5\u7814\u7a76\u6295\u5165\u4e86\u8fd1$150\u4e07\u7f8e\u5143\uff0c\u8fd9\u7684\u786e\u662f\u6211\u4eec\u5f15\u4ee5\u4e3a\u8c6a\u7684\u4e8b\u60c5\u3002<\/p>\n<p><strong>\u60a8\u5e0c\u671b\u4e16\u754c\u4e86\u89e3\u8d35\u7ec4\u7ec7\u7684\u54ea\u4e9b\u65b9\u9762\uff1f<\/strong>:<\/p>\n<p>\u6211\u4eec\u6700\u8fd1\u542f\u52a8\u4e86\u4e00\u9879\u57fa\u56e0\u6cbb\u7597\u8ba1\u5212\uff0c\u65e8\u5728\u901a\u8fc7\u8d44\u52a9\u591a\u79cd\u57fa\u56e0\u6cbb\u7597\u65b9\u6cd5\u7684\u7814\u7a76\uff0c\u52a0\u5feb\u4eba\u4eec\u5bf9\u57fa\u56e0\u6cbb\u7597\u4f5c\u4e3a LGMD2A \u6cbb\u7597\u65b9\u6cd5\u7684\u4e86\u89e3\u3002\u5982\u679c\u5f53\u524d\u6216\u672a\u6765\u7684\u57fa\u56e0\u6cbb\u7597\u8ba1\u5212\u7814\u7a76\u9879\u76ee\u53d6\u5f97\u79ef\u6781\u6210\u679c\uff0c\u6211\u4eec\u5c06\u542f\u52a8\u9488\u5bf9 LGMD2A \u60a3\u8005\u7684\u4e34\u5e8a\u8bd5\u9a8c\u3002\u6211\u4eec\u5c06\u7ee7\u7eed\u8d44\u52a9\u65b0\u9879\u76ee\uff0c\u656c\u8bf7\u671f\u5f85\u6211\u4eec\u7684\u516c\u544a\u3002 <a href=\"http:\/\/www.curecalpain3.org\/research\">http:\/\/www.curecalpain3.org\/research<\/a><\/p>\n<p><strong>\u4eba\u4eec\u5982\u4f55\u53c2\u4e0e\u652f\u6301\u8d35\u7ec4\u7ec7\uff1a<\/strong><\/p>\n<p>\u5c06\u4e00\u79cd\u7597\u6cd5\u4ece\u7814\u7a76\u5b9e\u9a8c\u5ba4\u5e26\u5165\u4e34\u5e8a\u8bd5\u9a8c\u662f\u4e00\u4e2a\u6f2b\u957f\u800c\u6602\u8d35\u7684\u8fc7\u7a0b\u3002\u4eba\u4eec\u652f\u6301\u6211\u4eec\u7ec4\u7ec7\u4f7f\u547d\u7684\u6700\u91cd\u8981\u65b9\u5f0f\u5c31\u662f\u6350\u6b3e\u3002\u6bcf\u4e00\u5143\u94b1\u90fd\u4f1a\u5bf9\u6211\u4eec\u6cbb\u6108\u8fd9\u79cd\u808c\u8089\u840e\u7f29\u6027\u75be\u75c5\u7684\u52aa\u529b\u4ea7\u751f\u5f71\u54cd\u3002<\/p>\n<p>\u6350\u8d60\u8005\u53ef\u4ee5\u901a\u8fc7\u4e09\u79cd\u65b9\u5f0f\u8fdb\u884c\u6350\u8d60\uff1a<\/p>\n<p>&#8211; <a href=\"https:\/\/donatenow.networkforgood.org\/C3\">\u6211\u4eec\u7684\u7f51\u7ad9<\/a> (\u5728\u7ebf)<\/p>\n<p>- \u6211\u4eec\u7684 <a href=\"https:\/\/www.crowdrise.com\/o\/en\/campaign\/c3-gene-therapy-initiative\/coalitiontocurecalpa\">Crowdrise \u6d3b\u52a8<\/a> (\u5728\u7ebf)<\/p>\n<p>- \u901a\u8fc7\u652f\u7968\u90ae\u5bc4\uff08\u79bb\u7ebf\uff09<\/p>\n<p><a href=\"\/zh\/info@curecalpain3.org\/\">\u7ed9\u6211\u4eec\u53d1\u90ae\u4ef6<\/a> \u7d22\u53d6\u6350\u8d60\u8868\u683c\u6216\u4ece\u4ee5\u4e0b\u7f51\u5740\u4e0b\u8f7d\u6350\u8d60\u8868\u683c <a href=\"http:\/\/files.constantcontact.com\/fc88c999301\/4a707677-bb13-4ccf-a5a7-d75c7630cb0e.pdf\">http:\/\/files.constantcontact.com\/fc88c999301\/4a707677-bb13-4ccf-a5a7-d75c7630cb0e.pdf<\/a><\/p>\n<p><strong>\u8054\u7cfb\u8d35\u7ec4\u7ec7\u7684\u6700\u4f73\u65b9\u5f0f\u662f\u4ec0\u4e48\uff1f<\/strong><\/p>\n<p><a href=\"\/zh\/info@curecalpain3.org\/\">\u7ed9\u6211\u4eec\u53d1\u9001\u7535\u5b50\u90ae\u4ef6<\/a> \u4e8e <a href=\"mailto:info@curecalpain3.org\">info@curecalpain3.org<\/a>.\u6211\u4eec\u5c06\u56de\u590d\uff01<\/p>\n<p><strong>\u60a8\u8fd8\u6709\u4ec0\u4e48\u8981\u8865\u5145\u7684\u5417\uff1f<\/strong><\/p>\n<p>\u5982\u679c\u60a8\u77e5\u9053\u81ea\u5df1\u60a3\u6709\u67d0\u79cd\u5f62\u5f0f\u7684\u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\uff0c\u8bf7\u63a8\u52a8\u57fa\u56e0\u68c0\u6d4b\u4ee5\u786e\u5b9a\u60a8\u7684\u7c7b\u578b\u3002\u6240\u6709\u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\u7ec4\u7ec7\u548c\u79d1\u5b66\u754c\u5bf9\u8fd9\u7c7b\u75be\u75c5\u4ecd\u6709\u8bb8\u591a\u9700\u8981\u4e86\u89e3\u7684\u5730\u65b9\uff0c\u60a8\u53ef\u4ee5\u901a\u8fc7\u52a0\u5165\u76f8\u5e94\u7684\u60a3\u8005\u767b\u8bb0\u518c\u6765\u63d0\u4f9b\u5e2e\u52a9\u3002\u60a8\u53ef\u4ee5\u901a\u8fc7\u52a0\u5165\u76f8\u5e94\u7684\u60a3\u8005\u767b\u8bb0\u518c\u6765\u63d0\u4f9b\u5e2e\u52a9\u3002\u8bf7\u77e5\u9053\uff0c\u6211\u4eec\u6bcf\u5929\u90fd\u5728\u79ef\u6781\u52aa\u529b\uff0c\u4ee5\u4e86\u89e3\u66f4\u591a\u6709\u5173\u9499\u9690\u533f\u75c7\u7684\u77e5\u8bc6\uff0c\u5e76\u627e\u5230\u6cbb\u7597\u65b9\u6cd5\u6216\u6cbb\u6108\u65b9\u6cd5\u3002<\/p>\n<p>\u00a0<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p>\u00a0<\/p>\n<p>\u00a0<\/p>","protected":false},"excerpt":{"rendered":"<p>NAME 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