{"id":3755,"date":"2020-11-15T14:15:25","date_gmt":"2020-11-15T20:15:25","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3755"},"modified":"2024-02-09T14:24:26","modified_gmt":"2024-02-09T14:24:26","slug":"individual-with-lgmd-neil","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2020\/11\/15\/individual-with-lgmd-neil\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a Neil"},"content":{"rendered":"

\"\"<\/a><\/p>\n

\u59d3\u540d\uff1a Neil Kramer \u5c3c\u5c14-\u514b\u83b1\u9ed8<\/strong><\/p>\n

\u5e74\u9f84<\/strong>: \u00a050<\/p>\n

\u56fd\u5bb6<\/strong>: \u7f8e\u56fd<\/p>\n

LGMD \u5b50\u7c7b\u578b<\/strong>: \u672a\u77e5<\/p>\n

\u00a0<\/strong><\/p>\n

\u60a8\u5728\u51e0\u5c81\u65f6\u88ab\u786e\u8bca<\/strong>:<\/p>\n

\u6211\u662f\u5728 47 \u5c81\u65f6\u88ab\u786e\u8bca\u7684\u3002<\/p>\n

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\u5c0f\u65f6\u5019\uff0c\u6211\u4ece\u6765\u4e0d\u4f1a\u505a\u4fef\u5367\u6491\u3001\u5f15\u4f53\u5411\u4e0a\u3001\u4f53\u80b2\u8bfe\u4e0a\u7684\u722c\u7ef3\u3001\u5feb\u901f\u8dd1\u6b65\u7b49\u3002\u6211\u4e5f\u4ece\u6765\u4e3e\u4e0d\u8d77\u91cd\u7269\u3002\u6211\u53ea\u662f\u89c9\u5f97\u81ea\u5df1\u662f\u4e2a\u4e66\u5446\u5b50\uff0c\u662f\u4e2a\u4f53\u8d28\u8f83\u5f31\u7684\u5b69\u5b50\u3002\u6211\u559c\u6b22\u97f3\u4e50\uff0c\u6210\u4e86\u4e00\u4e2a\u4e50\u961f\u4e66\u5446\u5b50\u3002<\/p>\n

\u4e00\u65e6\u6211\u88ab\u8bca\u65ad\u51fa\u60a3\u6709\u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\uff0c\u751f\u6d3b\u4e2d\u7684\u5f88\u591a\u4e8b\u60c5\u4f3c\u4e4e\u90fd\u53d8\u5f97\u6709\u610f\u4e49\u4e86\u3002<\/p>\n

\u60a8\u662f\u5426\u6709\u5176\u4ed6\u5bb6\u5ead\u6210\u5458\u60a3\u6709 LGMD\uff1a <\/strong><\/p>\n

\u4e0d\uff0c\u6211\u6ca1\u6709\u4efb\u4f55\u5bb6\u5ead\u6210\u5458\u60a3\u6709 LGMD\u3002\u6211\u60f3\u6211\u7684\u60c5\u51b5\u662f\u4e2a\u8c1c\u3002<\/p>\n

\u60a8\u8ba4\u4e3a LGMD \u60a3\u8005\u5728\u751f\u6d3b\u4e2d\u9762\u4e34\u7684\u6700\u5927\u6311\u6218\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n

\u6211\u6b63\u5728\u5c3d\u6211\u6240\u80fd\u591a\u8d70\u52a8\uff0c\u4ee5\u5ef6\u7f13\u75c5\u60c5\u7684\u53d1\u5c55\uff1b\u4e0d\u8fc7\uff0c\u6211\u786e\u5b9e\u6ce8\u610f\u5230\u6211\u7684\u53cc\u817f\u8d8a\u6765\u8d8a\u65e0\u529b\u3002\u6211\u5fc5\u987b\u66f4\u52a0\u5c0f\u5fc3\uff0c\u907f\u514d\u8dcc\u5012\u3002\u6211\u9700\u8981\u66f4\u591a\u503e\u542c\u81ea\u5df1\u8eab\u4f53\u7684\u58f0\u97f3\uff0c\u4ee5\u786e\u5b9a\u4f55\u65f6\u9700\u8981\u4f7f\u7528\u52a9\u884c\u5668\u6216\u6ed1\u677f\u8f66\u3002\u6211\u77e5\u9053\u6211\u4e0d\u5e94\u8be5\u611f\u5230\u5c34\u5c2c\uff0c\u4f46\u6211\u9762\u4e34\u7684\u6311\u6218\u662f\u5982\u4f55\u514b\u670d\u5c34\u5c2c\uff0c\u505a\u6211\u81ea\u5df1\u3002\u52a9\u884c\u5668\u5177\u662f\u5e2e\u52a9\u6211\u7ee7\u7eed\u4fdd\u6301\u72ec\u7acb\u7684\u5de5\u5177\u3002<\/p>\n

\u6211\u4e5f\u5f00\u59cb\u6ce8\u610f\u5230\u4e0a\u81c2\u65e0\u529b\u3002\u6211\u4e00\u76f4\u4e13\u6ce8\u4e8e\u6211\u7684\u53cc\u817f\uff0c\u7136\u800c\uff0c\u6211\u5f00\u59cb\u62c5\u5fc3\u672a\u6765\u4f1a\u6709\u66f4\u591a\u7684\u6311\u6218\u3002\u6211\u9762\u4e34\u7684\u6311\u6218\u662f\u8ba9\u81ea\u5df1\u4e0d\u53bb\u62c5\u5fc3\u672a\u6765\uff0c\u800c\u662f\u4eab\u53d7\u6bcf\u4e00\u5929\u3002\u6211\u6709\u4e00\u4e2a\u7f8e\u597d\u7684\u5bb6\u5ead\u548c\u4e00\u4e2a\u652f\u6301\u6211\u7684\u5de5\u4f5c\u73af\u5883\uff0c\u5e2e\u52a9\u6211\u7ee7\u7eed\u6211\u6210\u529f\u7684\u4e8b\u4e1a\u3002<\/p>\n

\u60a8\u6700\u5927\u7684\u6210\u5c31\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n

\u6211\u8ba4\u4e3a\u6211\u6700\u5927\u7684\u6210\u5c31\u662f\u6211\u5728\u793e\u4f1a\u670d\u52a1\u9886\u57df\u7684\u804c\u4e1a\u751f\u6daf\u3002\u6211\u5728\u4e00\u5bb6\u540d\u4e3a\u5723\u5730\u4e9a\u54e5\u5730\u533a\u4e2d\u5fc3\uff08SDRC\uff09\u7684\u673a\u6784\u5de5\u4f5c\u3002\u6211\u4eec\u8d1f\u8d23\u534f\u8c03\u4e3a 32,000 \u591a\u540d\u53d1\u80b2\u969c\u788d\u4eba\u58eb\u53ca\u5176\u5bb6\u5ead\u63d0\u4f9b\u7684\u670d\u52a1\u3002\u6211\u4eec\u4e3a\u793e\u533a\u6240\u505a\u7684\u5de5\u4f5c\u4ee4\u4eba\u60ca\u53f9\u3002\u5ba2\u6237\u662f\u6211\u4eec\u7684\u91cd\u4e2d\u4e4b\u91cd\u3002\u5728\u8fc7\u53bb\u7684\u51e0\u5e74\u91cc\uff0c\u6211\u4e00\u76f4\u62c5\u4efb\u672c\u673a\u6784\u7684\u7acb\u6cd5\u8054\u7edc\u5458\u3002\u7531\u4e8e\u6211\u4eec\u7684\u8d44\u91d1\u6765\u81ea\u52a0\u5229\u798f\u5c3c\u4e9a\u5dde\uff0c\u6211\u7ecf\u5e38\u4e0e\u5dde\u8bae\u5458\u53ca\u5176\u5de5\u4f5c\u4eba\u5458\u4f1a\u9762\uff0c\u4ee5\u786e\u4fdd\u6211\u4eec\u4e3a\u5ba2\u6237\u548c\u5bb6\u5ead\u63d0\u4f9b\u7684\u670d\u52a1\u7cfb\u7edf\u4fdd\u6301\u5b8c\u6574\u3002\u6211\u786e\u5b9e\u4e3a\u6211\u4eec\u7684\u7cfb\u7edf\u8fdb\u884c\u4e86\u5ba3\u4f20\u3002\u6211\u76f8\u4fe1\u6211\u4eec\u7684\u52aa\u529b\u975e\u5e38\u6210\u529f\u3002<\/p>\n

\u73b0\u5728\uff0c\u6211\u88ab\u8bca\u65ad\u51fa\u60a3\u6709\u8f7b\u5ea6\u884c\u52a8\u969c\u788d\u75c7\uff0c\u8fd9\u8ba9\u6211\u5bf9\u6211\u4eec\u6240\u670d\u52a1\u7684\u4e00\u4e9b\u4f9d\u9760\u79fb\u52a8\u8bbe\u5907\u5b9e\u73b0\u72ec\u7acb\u7684\u5ba2\u6237\u611f\u540c\u8eab\u53d7\u3002\u6211\u7684\u8bca\u65ad\u7ed3\u679c\u4e0d\u4ec5\u589e\u5f3a\u4e86\u6211\u4e3a SDRC \u670d\u52a1\u7684\u5ba2\u6237\u5ba3\u4f20\u7684\u70ed\u60c5\uff0c\u4e5f\u589e\u5f3a\u4e86\u6211\u4e3a\u6240\u6709\u6b8b\u75be\u4eba\u5ba3\u4f20\u7684\u70ed\u60c5\u3002<\/p>\n

LGMD \u662f\u5982\u4f55\u5f71\u54cd\u60a8\u6210\u4e3a\u4eca\u5929\u7684\u81ea\u5df1\u7684\uff1f<\/strong><\/p>\n

\u5c3d\u7ba1 LGMD \u975e\u5e38\u5177\u6709\u6311\u6218\u6027\uff0c\u4f46\u5b83\u8ba9\u6211\u66f4\u52a0\u4e86\u89e3\u6211\u4eec\u793e\u533a\u4e2d\u6b8b\u75be\u4eba\u7684\u9700\u6c42\u3002\u50cf\u6211\u4eec\u6240\u6709\u4eba\u4e00\u6837\uff0c\u6211\u4e5f\u6709\u5fc3\u60c5\u597d\u7684\u65f6\u5019\uff0c\u4e5f\u6709\u624b\u811a\u611f\u5230\u6c89\u91cd\u548c\u75b2\u60eb\u7684\u65f6\u5019\u3002\u6211\u52aa\u529b\u514b\u670d\u8fd9\u4e9b\u4e0d\u6109\u5feb\u7684\u65e5\u5b50\uff0c\u786e\u4fdd\u81ea\u5df1\u5c1d\u8bd5\u4e00\u4e9b\u4f53\u80b2\u6d3b\u52a8\uff0c\u4ee5\u51cf\u7f13\u75be\u75c5\u7684\u53d1\u5c55\u3002\u6211\u5728\u60c5\u611f\u4e0a\u53d8\u5f97\u66f4\u52a0 \"\u575a\u5f3a\"\uff0c\u56e0\u4e3a\u6211\u4e0d\u60f3\u8ba9 LGMD \u963b\u6b62\u6211\u7684\u751f\u6d3b\u3002\u6211\u6709\u4e86\u66f4\u575a\u5b9a\u7684\u5ba3\u4f20\u51b3\u5fc3\uff0c\u5e76\u5c3d\u6211\u6240\u80fd\u63d0\u9ad8\u4eba\u4eec\u5bf9 LGMD \u548c\u6240\u6709\u808c\u8089\u840e\u7f29\u75be\u75c5\u7684\u8ba4\u8bc6\u3002<\/p>\n

\u6211\u4e00\u76f4\u4ece\u4e8b\u4e0e\u516c\u5171\u670d\u52a1\u76f8\u5173\u7684\u5de5\u4f5c\u3002\u6211\u4e00\u76f4\u6709\u7ade\u9009\u516c\u804c\u7684\u613f\u671b\u3002\u5c3d\u7ba1\u6709 LGMD \u7684\u5e2e\u52a9\uff0c\u6211\u73b0\u5728\u8fd8\u662f\u5f53\u5730\u5e02\u8bae\u4f1a\u7684\u5019\u9009\u4eba\u3002\u6211\u7684\u9996\u8981\u4efb\u52a1\u4e4b\u4e00\u662f\u4e3a\u6b8b\u75be\u4eba\u548c\u8001\u5e74\u4eba\u4ee3\u8a00\u3002\u6211\u5e0c\u671b\u786e\u4fdd\u4eba\u4eec\u80fd\u591f\u66f4\u597d\u5730\u4f7f\u7528\u6211\u4eec\u7684\u7a7a\u5730\u3001\u516c\u56ed\u548c\u6b65\u9053\u7cfb\u7edf\u3002LGMD \u4e0d\u4f1a\u963b\u6b62\u6211\u5b9e\u73b0\u6211\u7684\u68a6\u60f3\uff01<\/p>\n

\u60a8\u5e0c\u671b\u4e16\u754c\u4e86\u89e3 LGMD \u7684\u54ea\u4e9b\u65b9\u9762\uff1f<\/strong>: \u00a0<\/strong><\/p>\n

\u6211\u60f3\u8ba9\u4e16\u4eba\u77e5\u9053\uff0c\u6709\u4e9b\u6b8b\u75be\u662f\u4e0d\u4e3a\u4eba\u77e5\u7684\u3002\u6211\u4ecd\u7136\u53ef\u4ee5\u8d70\u8def\uff0c\u5e76\u5c3d\u53ef\u80fd\u7ecf\u5e38\u8fd9\u6837\u505a\u3002\u5f53\u6211\u7684\u817f\u611f\u5230\u75b2\u52b3\/\u6c89\u91cd\u65f6\uff0c\u6211\u4f1a\u4f7f\u7528\u52a9\u884c\u5668\u3002\u5982\u679c\u8981\u8d70\u5f88\u8fdc\u7684\u8def\u6216\u5728\u4eba\u7fa4\u4e2d\uff0c\u6211\u5c31\u9700\u8981\u6ed1\u677f\u8f66\u6216\u8f6e\u6905\u3002\u5728\u4f7f\u7528\u6b8b\u75be\u4eba\u4e13\u7528\u8f66\u4f4d\u65f6\uff0c\u5982\u679c\u6211\u4e0d\u9700\u8981\u52a9\u884c\u5668\uff0c\u6709\u65f6\u4f1a\u906d\u5230\u522b\u4eba\u7684\u767d\u773c\uff0c\u4ed6\u4eec\u4e0d\u7406\u89e3\u6211\u4e3a\u4ec0\u4e48\u9700\u8981\u4e13\u7528\u8f66\u4f4d\u3002\u6211\u7684\u817f\u5f88\u8f6f\uff0c\u6709\u6454\u5012\u7684\u5371\u9669\u3002\u6211\u4e0d\u5e94\u8be5\u56e0\u4e3a\u9700\u8981\u4f7f\u7528\u6b8b\u75be\u4eba\u505c\u8f66\u4f4d\u800c\u611f\u5230\u5c34\u5c2c\u6216\u7f9e\u6127\u3002<\/p>\n

\u6211\u5e0c\u671b\u63d0\u9ad8\u4eba\u4eec\u5bf9 LGMD \u7684\u8ba4\u8bc6\uff0c\u4e3a LGMD \u7684\u7814\u7a76\u7b79\u96c6\u8d44\u91d1\uff0c\u5e76\u4e3a\u6211\u4eec\u6240\u6709\u7684\u60a3\u8005\u4ee3\u8a00\u3002<\/p>\n

\u5982\u679c\u60a8\u7684 LGMD \u660e\u5929\u5c31\u80fd \"\u6cbb\u6108\"\uff0c\u60a8\u9996\u5148\u60f3\u505a\u7684\u662f\u4ec0\u4e48\uff1f<\/strong>: \u00a0<\/strong><\/p>\n

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