{"id":3502,"date":"2014-07-30T22:47:56","date_gmt":"2014-07-30T22:47:56","guid":{"rendered":"https:\/\/lpfch.org\/heal-eb-and-eddie-and-jill-vedder-help-fund-treatments-for-children-with-life-threatening-skin-disorder\/"},"modified":"2024-09-10T22:21:19","modified_gmt":"2024-09-10T22:21:19","slug":"heal-eb-and-eddie-and-jill-vedder-help-fund-treatments-for-children-with-life-threatening-skin-disorder","status":"publish","type":"post","link":"https:\/\/lpfch.org\/zh\/impact-stories\/heal-eb-and-eddie-and-jill-vedder-help-fund-treatments-for-children-with-life-threatening-skin-disorder\/","title":{"rendered":"\u201c\u6cbb\u6108 EB\u201d \u4ee5\u53ca Eddie \u548c Jill Vedder \u4e3a\u60a3\u6709\u5371\u53ca\u751f\u547d\u7684\u76ae\u80a4\u75c5\u7684\u513f\u7ae5\u63d0\u4f9b\u6cbb\u7597\u8d44\u91d1"},"content":{"rendered":"

\u4f4d\u4e8e\u5357\u52a0\u5dde\u7684\u975e\u8425\u5229\u7ec4\u7ec7\u201c\u6cbb\u6108\u5927\u75b1\u6027\u8868\u76ae\u677e\u89e3\u75c7\u201d(EB)\uff08www.healeb.org\uff09\u5411\u65af\u5766\u798f\u5927\u5b66\u533b\u5b66\u9662\u76ae\u80a4\u75c5\u5b66\u548c\u513f\u79d1\u5b66\u540d\u8a89\u6559\u6388\u963f\u5c14\u5f17\u96f7\u5fb7\u00b7\u83b1\u6069\u535a\u58eb\u7684\u7814\u7a76\u6350\u8d60\u4e86$50,000\u82f1\u9551\uff0c\u7528\u4e8e\u652f\u6301\u8be5\u75c5\u7684\u6cbb\u6108\u65b9\u6cd5\u3002EB\u662f\u4e00\u79cd\u7f55\u89c1\u4e14\u5371\u53ca\u751f\u547d\u7684\u9057\u4f20\u6027\u76ae\u80a4\u75c5\u3002\u83b1\u6069\u535a\u58eb\u9886\u5bfc\u7684\u4e34\u5e8a\u8bd5\u9a8c\u65e8\u5728\u5f00\u53d1\u65b0\u6280\u672f\uff0c\u7528\u4e8e\u8bc4\u4f30EB\u60a3\u8005\u7684\u76ae\u80a4\u72b6\u51b5\uff0c\u5e76\u51cf\u5c11\u76ae\u80a4\u6d3b\u68c0\u7684\u9700\u6c42\u3002\u4ed6\u8fd8\u5728\u65af\u5766\u798f\u9732\u897f\u5c14\u00b7\u5e15\u5361\u5fb7\u513f\u7ae5\u533b\u9662(Lucile Packard Children's Hospital Stanford)\u8d1f\u8d23\u6cbb\u7597EB\u513f\u7ae5\uff0c\u8be5\u533b\u9662\u662f\u5168\u7f8e\u4ec5\u6709\u7684\u51e0\u5bb6\u62e5\u6709\u6b64\u7c7b\u4e13\u4e1a\u77e5\u8bc6\u7684\u533b\u9662\u4e4b\u4e00\u3002<\/span><\/p>\n

\u76ee\u524d\u6b63\u5728\u8fdb\u884c\u7684\u8bd5\u9a8c\u5305\u62ec\u6d4b\u8bd5\u5229\u7528\u5e72\u7ec6\u80de\u201c\u57f9\u80b2\u201d\u65b0\u76ae\u80a4\uff0c\u5e76\u5c06\u5176\u79fb\u690d\u5230EB\u60a3\u8005\u7684\u4f24\u53e3\u4e0a\u3002\u5982\u679c\u79fb\u690d\u6210\u529f\uff0c\u8eab\u4f53\u4f1a\u4ea7\u751f\u951a\u5b9a\u7ea4\u7ef4\uff0c\u5e2e\u52a9\u73b0\u6709\u76ae\u80a4\u4e0e\u79fb\u690d\u7269\u4e4b\u95f4\u5efa\u7acb\u65e0\u7f1d\u8fde\u63a5\u3002\u53e6\u4e00\u4e2a\u8fdb\u5c55\u7684\u6807\u5fd7\u662f\u79fb\u690d\u7269\u5e95\u90e8\u51fa\u73b0\u4e86\u80f6\u539f\u86cb\u767d\uff0c\u8fd9\u662f\u4e00\u79cd\u5b58\u5728\u4e8e\u7ed3\u7f14\u7ec4\u7ec7\u4e2d\u7684\u7ed3\u6784\u86cb\u767d\u3002\u5728\u6574\u4e2a\u8bd5\u9a8c\u8fc7\u7a0b\u4e2d\uff0c\u7f8e\u56fd\u98df\u54c1\u836f\u54c1\u76d1\u7763\u7ba1\u7406\u5c40 (FDA) \u8981\u6c42\u56e2\u961f\u8ddf\u8e2a\u6cbb\u7597\u6548\u679c\uff0c\u8fd9\u901a\u5e38\u9700\u8981\u5bf9\u63a5\u53d7\u6cbb\u7597\u7684\u76ae\u80a4\u533a\u57df\u8fdb\u884c\u75db\u82e6\u7684\u6d3b\u68c0\u3002<\/p>\n

\u5728 Heal EB \u7684\u8d44\u52a9\u4e0b\uff0cLane \u7684\u56e2\u961f\u5c06\u81f4\u529b\u4e8e\u5f00\u53d1\u4e00\u79cd\u6d4b\u91cf\u5de5\u5177\uff0c\u8fd9\u79cd\u5de5\u5177\u6bd4\u6d3b\u68c0\u4fb5\u5165\u6027\u66f4\u5c0f\u3001\u75db\u82e6\u66f4\u5c0f\uff0c\u5e76\u4e14\u53ef\u4ee5\u9650\u5236\u8bc4\u4f30\u4e34\u5e8a\u8bd5\u9a8c\u4e2d\u6b63\u5728\u6d4b\u8bd5\u7684\u65b9\u6cd5\u7684\u6709\u6548\u6027\u6240\u9700\u7684\u8868\u9762\u79ef\u3002<\/p>\n

Heal EB \u7684\u8054\u5408\u521b\u59cb\u4eba Heather Fullmer \u662f\u4e00\u540d\u62a4\u58eb\uff0c\u540c\u65f6\u4e5f\u662f\u4e00\u540d\u60a3\u6709\u8be5\u75be\u75c5\u7684\u5e7c\u513f\u7684\u6bcd\u4eb2\u3002\u5979\u8868\u793a\uff1a\u201c\u8d44\u52a9\u5f00\u53d1\u4e00\u79cd\u521b\u4f24\u8f83\u5c0f\u7684\u8bbe\u5907\u662f\u6211\u4eec\u7684\u9996\u8981\u4efb\u52a1\u3002\u968f\u7740\u6d4b\u91cf\u8bbe\u5907\u7684\u7814\u53d1\uff0c\u4e34\u5e8a\u533b\u751f\u5c06\u80fd\u591f\u66f4\u53ef\u9760\u3001\u66f4\u51c6\u786e\u5730\u6d4b\u91cf\u6cbb\u7597\u6548\u679c\uff0c\u800c\u65e0\u9700\u5bf9\u76ae\u80a4\u8868\u9762\u9020\u6210\u592a\u5927\u7684\u521b\u4f24\u3002\u76ee\u524d\uff0c\u6574\u4e2a\u8bd5\u9a8c\u8fc7\u7a0b\u4e2d\u9700\u8981\u8fdb\u884c\u591a\u6b21\u6d4b\u91cf\uff0c\u8fd9\u5bf9\u60a3\u6709 EB \u7684\u513f\u7ae5\u5f71\u54cd\u5de8\u5927\u3002\u6211\u4eec\u5f88\u8363\u5e78\u80fd\u591f\u53c2\u4e0e\u5f00\u53d1\u8fd9\u79cd\u6709\u52a9\u4e8e\u52a0\u5feb\u8fd9\u4e9b\u4e34\u5e8a\u8bd5\u9a8c\u7684\u8bbe\u5907\u3002\u201d<\/p>\n

Heal EB \u9996\u5e2d\u8fd0\u8425\u5b98\u5409\u5c14\u00b7\u7ef4\u5fb7 (Jill Vedder) \u8865\u5145\u9053\uff0c\u5979\u548c\u4e08\u592b\u3001\u73cd\u73e0\u9171\u4e50\u961f (Pearl Jam) \u4e3b\u5531\u57c3\u8fea\u00b7\u7ef4\u5fb7 (Eddie Vedder) \u5f88\u8363\u5e78\u80fd\u591f\u62c5\u4efb Heal EB \u57fa\u91d1\u4f1a\u7684\u8463\u4e8b\u4f1a\u6210\u5458\u3002\u4ed6\u4eec\u4e0e\u5bcc\u5c14\u9ed8\u592b\u5987\u5b69\u5b50\u7684\u6df1\u539a\u53cb\u8c0a\u6fc0\u52b1\u7740\u4ed6\u4eec\u81f4\u529b\u4e8e\u6539\u5584\u5168\u7403 EB \u513f\u7ae5\u7684\u751f\u6d3b\u3002<\/p>\n

\u7ef4\u5fb7\u8bf4\uff1a\u201c\u770b\u5230\u8fd9\u79cd\u75be\u75c5\u5bf9\u4ed6\u4eec\u5e74\u5e7c\u7684\u513f\u5b50\u7684\u5f71\u54cd\uff0c\u5e76\u89c1\u8bc1\u4ed6\u4ee4\u4eba\u96be\u4ee5\u7f6e\u4fe1\u7684\u529b\u91cf\u548c\u97e7\u6027\uff0c\u6211\u4eec\u6bcf\u5929\u90fd\u5728\u6fc0\u52b1\u81ea\u5df1\u52aa\u529b\u7b79\u96c6\u8d44\u91d1\u5e76\u5bfb\u627e\u6cbb\u6108\u65b9\u6cd5\u3002\u201d<\/p>\n

Heal EB \u7684\u6350\u8d60\u5f97\u76ca\u4e8e\u53bb\u5e74\u79cb\u5929\u5728\u9a6c\u91cc\u5e03\u4e3e\u529e\u7684\u4e00\u573a\u6148\u5584\u6d3b\u52a8\u3002\u5728\u6b64\u4e4b\u524d\uff0cHeal EB \u5df2\u5229\u7528\u5176\u6210\u7acb\u7b2c\u4e00\u5e74\u7b79\u96c6\u7684\u8d44\u91d1\uff0c\u4e8e 2013 \u5e74\u5411 Lane \u7684\u57fa\u56e0\u8f6c\u79fb\u8bd5\u9a8c\u6350\u8d60\u4e86 $95,000 \u7f8e\u5143\u3002<\/p>\n

\u6210\u4e3a\u50cf\u7ef4\u5fb7\u4e00\u5bb6\u4e00\u6837\u7684\u513f\u7ae5\u7684\u634d\u536b\u8005\uff0c\u5e76\u4e14 \u8ba1\u5212\u60a8\u7684\u7b79\u6b3e\u6d3b\u52a8<\/a> \u4eca\u5929\uff01<\/p>","protected":false},"excerpt":{"rendered":"

\u4e3a\u4e86\u8fdb\u4e00\u6b65\u63a2\u7d22\u6cbb\u6108\u5927\u75b1\u6027\u8868\u76ae\u677e\u89e3\u75c7\uff08EB\uff09\u7684\u65b9\u6cd5\uff0c\u8fd9\u5bb6\u4f4d\u4e8e\u5357\u52a0\u5dde\u7684\u975e\u8425\u5229\u7ec4\u7ec7\u2026\u2026<\/p>","protected":false},"author":17,"featured_media":3503,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[21,22],"class_list":["post-3502","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-donor-stories","category-patient-stories"],"acf":[],"yoast_head":"\n\u2018Heal 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