The LGMD Awareness Foundation, Inc. is a 501(c)(3) non-profit advocacy organization committed to raising global awareness about limb-girdle muscular dystrophy (LGMD), a group of rare and often debilitating neuromuscular diseases.<\/strong><\/p>\n<\/div> Our mission is strengthened through collaborative efforts with other LGMD foundations, as we unite to provide curated educational resources and support for both the LGMD community and the public.<\/p>\n \u901a\u8fc7\u63d0\u9ad8\u4eba\u4eec\u5bf9 LGMD \u7684\u8ba4\u8bc6\u5e76\u4e3a\u53d7 LGMD \u5f71\u54cd\u7684\u4eba\u4eec\u8fdb\u884c\u5ba3\u4f20\uff0c\u6211\u4eec\u52aa\u529b\u786e\u4fdd\u9762\u4e34\u8fd9\u79cd\u6e10\u8fdb\u6027\u75be\u75c5\u7684\u60a3\u8005\u80fd\u591f\u66f4\u8f7b\u677e\u5730\u83b7\u5f97\u8bca\u65ad\u3001\u62a4\u7406\u548c\u6cbb\u7597\u3002\u6211\u4eec\u5ba3\u4f20\u6d3b\u52a8\u7684\u4e00\u5927\u4eae\u70b9\u662f\u6bcf\u5e74 9 \u6708 30 \u65e5\u4e3e\u529e\u7684 \"\u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\u5ba3\u4f20\u65e5\"\uff08Limb-Girdle Muscular Dystrophy Awareness Day\uff09\uff0c\u8be5\u6d3b\u52a8\u662f\u4f20\u64ad\u77e5\u8bc6\u548c\u4fc3\u8fdb\u793e\u533a\u53c2\u4e0e\u7684\u91cd\u8981\u5e73\u53f0\u3002<\/p>\n<\/div><\/div><\/div> \u53ea\u8981\u6211\u4eec\u9f50\u5fc3\u534f\u529b\uff0c\u5c31\u80fd\u6539\u53d8 LGMD \u60a3\u8005\u7684\u751f\u6d3b\uff0c\u6211\u4eec\u9f13\u52b1\u5927\u5bb6\u52a0\u5165\u5230\u8fd9\u9879\u91cd\u8981\u7684\u4e8b\u4e1a\u4e2d\u6765\u3002<\/p>\n LGMD \u610f\u8bc6\u57fa\u91d1\u4f1a\u516c\u53f8\uff08EIN\uff1a85-1504937\uff09\u662f\u4e00\u5bb6 501 (c)(3) \u514d\u7a0e\u516c\u5171\u6148\u5584\u673a\u6784\u3002\u56e0\u6b64\uff0c\u6240\u6709\u6350\u6b3e\u5747\u53ef\u5168\u989d\u514d\u7a0e\u3002<\/p>\n<\/div> LGMD \u5ba3\u4f20\u65e5\u521b\u59cb\u4eba<\/p>\n<\/div><\/li> \u56fd\u9645\u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\u4f1a\u8bae\u8054\u5408\u4e3b\u5e2d<\/p>\n<\/div><\/li> \u739b\u4e3d\u5c71\u5927\u5b66\u7406\u5b66\u58eb<\/p>\n<\/div><\/li> \u524d\u6ce8\u518c\u804c\u4e1a\u6cbb\u7597\u5e08\uff08OTR\uff09<\/p>\n<\/div><\/li> \u6570\u5341\u5e74\u6765\u4e00\u76f4\u662f\u6b8b\u75be\u4eba\u7684\u4ee3\u8a00\u4eba<\/p>\n<\/div><\/li> \u786e\u8bca\u4e3a LGMD2A\/R1 Calpain 3 \u76f8\u5173\u75be\u75c5<\/p>\n<\/div><\/li><\/ul><\/div><\/div><\/div> \"Lime Green for LGMD \"\u6d3b\u52a8\u534f\u8c03\u5458<\/p>\n<\/div><\/li> \u5317\u4f0a\u5229\u8bfa\u4f0a\u5927\u5b66\u5b66\u58eb<\/p>\n<\/div><\/li> \u524d\u5c0f\u5b66\u6559\u5e08\u548c\u5b97\u6559\u6559\u80b2\u534f\u8c03\u5458<\/p>\n<\/div><\/li> \u4e13\u804c\u7684 LGMD \u60a3\u8005\u4ee3\u8a00\u4eba<\/p>\n<\/div><\/li> \u786e\u8bca\u4e3a LGMD2i\/R9 \u808c\u5f20\u529b\u86cb\u767d\u76f8\u5173\u75be\u75c5<\/p>\n<\/div><\/li><\/ul><\/div><\/div><\/div> \u786e\u8bca\u4e3a LGMD2B\/R2 Dysferlin \u76f8\u5173\u75be\u75c5<\/p>\n<\/div><\/li> \u4fc4\u514b\u62c9\u8377\u9a6c\u5dde\u4e2d\u592e\u5927\u5b66\u6587\u5b66\u58eb<\/p>\n<\/div><\/li> \u5728\u533b\u7597\u4fdd\u5065\u548c\u975e\u8425\u5229\u9886\u57df\u62e5\u6709\u6570\u5341\u5e74\u7684\u516c\u5171\u5173\u7cfb\u548c\u8425\u9500\u7ecf\u9a8c\u3002<\/p>\n<\/div><\/li> \u4e13\u804c\u7684 LGMD \u60a3\u8005\u4ee3\u8a00\u4eba<\/p>\n<\/div><\/li> \u786e\u8bca\u4e3a LGMD2B\/R2 Dysferlin \u76f8\u5173\u75be\u75c5<\/p>\n<\/div><\/li><\/ul><\/div><\/div><\/div><\/div><\/div><\/div><\/div> \u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\u5ba3\u4f20\u65e5 \"\u662f\u4e00\u9879\u5408\u4f5c\u6d3b\u52a8\uff0c\u65e8\u5728\u63d0\u9ad8\u5168\u7403\u5bf9\u7f55\u89c1\u795e\u7ecf\u808c\u8089\u75be\u75c5--\u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\uff08LGMD\uff09\u7684\u8ba4\u8bc6\uff0c\u5e76\u5f15\u8d77\u4eba\u4eec\u5bf9\u8fd9\u7c7b\u5f71\u54cd\u8bb8\u591a\u513f\u7ae5\u548c\u6210\u4eba\u751f\u6d3b\u7684\u7f55\u89c1\u75be\u75c5\u7684\u5173\u6ce8\u3002 \u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\u5ba3\u4f20\u65e5 \"\u6bcf\u5e74 9 \u6708 30 \u65e5\u90fd\u4f1a\u5728\u5168\u7403\u8303\u56f4\u5185\u4e3e\u884c\u5e86\u795d\u6d3b\u52a8\u3002 \u901a\u8fc7\u6211\u4eec\u7684\u7f51\u7ad9\u548c\u5404\u79cd\u793e\u4ea4\u5a92\u4f53\u6e20\u9053\uff0c\u6211\u4eec\u7684\u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\u5ba3\u4f20\u5de5\u4f5c\u5168\u5e74\u90fd\u4f1a\u4ea7\u751f\u5e7f\u6cdb\u7684\u5f71\u54cd\u3002 \u6211\u4eec\u7684\u91cd\u70b9\u662f\u901a\u8fc7\u6211\u4eec\u7684\u7f51\u7ad9\u3001\u793e\u4ea4\u5a92\u4f53\u548c\u5404\u79cd LGMD \u76f8\u5173\u6d3b\u52a8\uff0c\u4e3a LGMD \u793e\u533a\u548c\u516c\u4f17\u63d0\u4f9b\u7cbe\u5fc3\u7b56\u5212\u7684\u6559\u80b2\u4fe1\u606f\u548c\u8d44\u6e90\u3002 <\/p>\n \u7b2c\u4e00\u5c4a LGMD \u5ba3\u4f20\u65e5\u4e8e 2015 \u5e74\u4e3e\u884c\uff0c\u7531\u60a3\u6709 LGMD2A\/R1 Calpain 3 \u76f8\u5173\u75be\u75c5\u7684\u5361\u7f57\u5c14-\u4e9a\u4f2f\u62c9\u7f55\uff08Carol Abraham\uff09\u521b\u7acb\u3002<\/p><\/p><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div> \u51ef\u8389-\u5e03\u62c9\u4f50<\/strong> \u96f7\u5207\u5c14-\u5fb7\u5eb7\u8482<\/strong> \u8428\u62c9-\u57c3\u8499\u65af<\/strong> \u80af\u7279-\u5f17\u9c81\u6e29<\/strong> \u65af\u79d1\u7279-\u5f17\u83b1\u6e29<\/strong> \u8ba9-\u76ae\u57c3\u5c14-\u6d1b\u6717<\/strong> Aleksandra Leijenhorst<\/b> \u73cd\u59ae\u5f17-\u674e\u7ef4<\/strong>![](\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2025\/08\/Screenshot-2025-08-.jpg\")
<\/span><\/div><\/div><\/div><\/div>![](\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/02\/Girdie.png\" "\\"Girdie\\"")
<\/span><\/div>\u8ba4\u8bc6\u6211\u4eec\u7684 LGMD \u5927\u4f7f Girdie<\/strong><\/h3><\/div>
LEARN MORE ><\/h5><\/div><\/div><\/div><\/div><\/div>
\u8463\u4e8b\u4f1a<\/h3><\/div>
![\"Laf](\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/12\/LAF-Board-Members-3.png\" "\\"\u62c9\u5c14\u592b\u7406\u4e8b\u4f1a\u6210\u5458")
<\/span><\/div><\/div><\/div>\u5361\u7f57\u5c14-\u4e9a\u4f2f\u62c9\u7f55\uff0c\u4e3b\u5e2d\/\u8d22\u52a1\u4e3b\u7ba1<\/h4><\/div>
![\"Laf](\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2022\/02\/LAF-Board-Members-karen-2.png\" "\\"Laf")
<\/span><\/div><\/div><\/div>\u51ef\u4f26-\u79d1\u5c14\uff0c\u526f\u603b\u88c1<\/h4><\/div>
![\"Img](\"https:\/\/lgmd-info.org\/wp-content\/uploads\/2023\/10\/IMG_4928.jpeg\" "\\"\u56fe\u7247")
Yumi Shim\uff0c\u79d8\u4e66<\/h4><\/div>
![\"Laf](\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2022\/04\/LAF-Board-Members-Rebecca.png\" "\\"Laf")
<\/span><\/div><\/div><\/div>Rebecca Gregg\uff0c\u8425\u9500\u603b\u76d1<\/h4><\/div>
LGMD \u5ba3\u4f20\u65e5<\/h3><\/div>
LGMD \u54a8\u8be2\u59d4\u5458\u4f1a<\/h3><\/div>
\n\u6cbb\u6108 LGMD2i \u57fa\u91d1\u4f1a<\/a> (LGMD 2I\/R9)<\/p>\n<\/div>\n
\nLGMD2D \u57fa\u91d1\u4f1a<\/a> (LGMD 2D\/R3)<\/p>\n<\/div>\n
\n\u8006\u90a3\u6559\u57fa\u91d1\u4f1a<\/a> (LGMD 2B\/R2)<\/p>\n<\/div>\n
\n\u5e93\u5c14\u7279+\u5f7c\u5f97\u57fa\u91d1\u4f1a<\/a> (LGMD 2C\/R5)<\/p>\n<\/div>\n
\n\u5e93\u5c14\u7279+\u5f7c\u5f97\u57fa\u91d1\u4f1a<\/a> (LGMD 2C\/R5)<\/p>\n
\nLGMD2i \u57fa\u91d1<\/a> (LGMD 2I\/R9)<\/p>\n<\/div>\n
\nStichting Spierkracht<\/a> (LGMD 2D\/R3)<\/p>\n<\/div>\n
\n\u6cbb\u7597\u9499\u86cb\u767d\u9176\u8054\u76df 3<\/a> (LGMD 2A\/R1)<\/p>\n<\/div>\n