{"id":24192,"date":"2026-05-29T08:39:14","date_gmt":"2026-05-29T15:39:14","guid":{"rendered":"https:\/\/lpfch.org\/?p=24192"},"modified":"2026-05-29T11:13:19","modified_gmt":"2026-05-29T18:13:19","slug":"turning-hope-into-action","status":"publish","type":"post","link":"https:\/\/lpfch.org\/zh\/impact-stories\/turning-hope-into-action\/","title":{"rendered":"\u5c06\u5e0c\u671b\u8f6c\u5316\u4e3a\u884c\u52a8\u00a0"},"content":{"rendered":"

\u201c\u6cbb\u6108ALD\u7684\u610f\u5fd7\u201d\u59cb\u4e8e\u4e00\u4e2a\u5bb6\u5ead\u7684\u7ecf\u5386\u3002\u6cf0\u52d2\u548c\u6cf0\u52d2\u00b7\u970d\u5c14\u592b\u5987\u8fce\u6765\u4ed6\u4eec\u7684\u513f\u5b50\u5a01\u5ec9\u65f6\uff0c\u4e00\u6b21\u4f8b\u884c\u7684\u65b0\u751f\u513f\u7b5b\u67e5\u53d1\u73b0\u4ed6\u60a3\u6709\u80be\u4e0a\u817a\u8111\u767d\u8d28\u8425\u517b\u4e0d\u826f\u75c7\uff08ALD\uff09\u2014\u2014\u4e00\u79cd\u7f55\u89c1\u7684\u9057\u4f20\u6027\u75be\u75c5\uff0c\u4f1a\u5f71\u54cd\u5927\u8111\u3001\u810a\u9ad3\u548c\u80be\u4e0a\u817a\u7cfb\u7edf\u3002.<\/span>\u00a0<\/span><\/p>\n

W<\/span>\u5f53\u4ed6\u4eec\u5f97\u77e5\u80be\u4e0a\u817a\u8111\u767d\u8d28\u8425\u517b\u4e0d\u826f\u75c7\uff08ALD\uff09\u5c1a\u65e0\u6cbb\u6108\u65b9\u6cd5\uff0c\u4e14\u7814\u7a76\u7ecf\u8d39\u6709\u9650\u65f6\uff0c\u970d\u5c14\u592b\u5987\u51b3\u5b9a\u91c7\u53d6\u884c\u52a8\u3002\u4ed6\u4eec\u521b\u7acb\u4e86 <\/span>\u6cbb\u6108\u80be\u4e0a\u817a\u8111\u767d\u8d28\u8425\u517b\u4e0d\u826f\u75c7\u7684\u610f\u613f<\/span><\/a>\u00a0\u5230 2024 \u5e74\u5e95\uff0c\u4ee5\u786e\u4fdd\u6ca1\u6709\u5bb6\u5ead\u4f1a\u56e0\u4e3a\u8fd9\u79cd\u8bca\u65ad\u800c\u611f\u5230\u7edd\u671b\u3002.<\/span>\u00a0<\/span><\/p>\n

\u8fd9\u5bf9\u592b\u5987\u5df2\u4ece\u652f\u6301\u4ed6\u4eec\u4f7f\u547d\u7684\u4eb2\u670b\u597d\u53cb\u90a3\u91cc\u7b79\u96c6\u4e86\u8d85\u8fc7260\u4e07\u7f8e\u5143\u7684\u5584\u6b3e\u3002\u4ed6\u4eec\u7684\u57fa\u91d1\u4f1a\u6700\u8fd1\u5229\u7528\u8fd9\u7b14\u8d44\u91d1\u5411\u65af\u5766\u798f\u5927\u5b66\u533b\u5b66\u9662\u6350\u8d60\u4e8617.5\u4e07\u7f8e\u5143\uff0c\u7528\u4e8e\u63a8\u8fdb\u4e09\u4e2a\u4e13\u6ce8\u4e8e\u80be\u4e0a\u817a\u8111\u767d\u8d28\u8425\u517b\u4e0d\u826f\u75c7\uff08ALD\uff09\u7684\u7814\u7a76\u9879\u76ee\u3002\u4ed6\u4eec\u8fd8\u8d44\u52a9\u4e86\u5168\u56fd\u5176\u4ed6\u4e94\u4e2aALD\u5353\u8d8a\u4e2d\u5fc3\u7684\u79d1\u7814\u9879\u76ee\u3002.<\/span>\u00a0<\/span><\/p>\n

\u201c\u6cf0\u52d2\u8bf4\uff1a\u201d\u901a\u8fc7\u6c47\u805a\u8be5\u9886\u57df\u6700\u6770\u51fa\u7684\u4eba\u624d\uff0c\u6211\u4eec\u6b63\u5728\u52a0\u5feb\u62ef\u6551\u751f\u547d\u7684\u7a81\u7834\u6027\u8fdb\u5c55\u7684\u6b65\u4f10\uff0c\u5e76\u4e3a\u7b49\u5f85\u7b54\u6848\u7684\u5bb6\u5ead\u5e26\u6765\u5207\u5b9e\u7684\u5e0c\u671b\u3002\u201d.<\/span>\u00a0<\/span><\/p>\n

At Stanford, Will to Cure ALD chose to support <\/span>\u57fa\u601d\u00b7\u8303\u00b7\u54c8\u4f26\uff0c\u533b\u5b66\u535a\u58eb<\/span><\/a>, \u4ed6\u662f\u795e\u7ecf\u75c5\u5b66\u526f\u6559\u6388\uff0c\u4e5f\u662fALD\u7814\u7a76\u9886\u57df\u7684\u5168\u56fd\u9886\u519b\u4eba\u7269\uff0c\u9886\u5bfc\u7740 <\/span>\u8303\u54c8\u4f26\u5b9e\u9a8c\u5ba4<\/span><\/a>.\u4ed6\u4eec\u7684\u7814\u7a76<\/span>\u00a0\u8fd9\u5e26\u6765\u4e86\u4e00\u9879\u4ee4\u4eba\u5174\u594b\u4e14\u610f\u60f3\u4e0d\u5230\u7684\u53d1\u73b0<\/span>.<\/span>\u00a0<\/span><\/p>\n

\u201c\u6211\u4eec\u5728\u5c0f\u9f20\u6a21\u578b\u4e2d\u53d1\u73b0\u4e86\u4e00\u79cd\u6b64\u524d\u672a\u66fe\u4e0e\u80be\u4e0a\u817a\u8111\u767d\u8d28\u8425\u517b\u4e0d\u826f\u75c7 (ALD) \u76f8\u5173\u7684\u514d\u75ab\u901a\u8def\u88ab\u5f3a\u70c8\u6fc0\u6d3b\uff0c\u201d\u8303\u00b7\u54c8\u4f26\u8bf4\u3002\u201c\u8fd9\u9879\u6350\u8d60\u4f7f\u6211\u4eec\u80fd\u591f\u63a2\u7a76\u60a3\u6709\u8fd9\u79cd\u75be\u75c5\u7684\u513f\u7ae5\u662f\u5426\u5b58\u5728\u540c\u6837\u7684\u7279\u5f81\uff0c\u5982\u679c\u5b58\u5728\uff0c\u662f\u5426\u53ef\u4ee5\u5feb\u901f\u5730\u5c06\u73b0\u6709\u7684\u836f\u7269\u6216\u996e\u98df\u7597\u6cd5\u7528\u4e8e\u6cbb\u7597ALD\u60a3\u513f\u3002\u201d<\/span>\u00a0<\/span><\/p>\n

\u6700\u7ec8\uff0c\u970d\u5c14\u592b\u5987\u4e50\u89c2\u5730\u8ba4\u4e3a\uff0c\u8fd9\u9879\u7814\u7a76\u5c06\u4ea7\u751f\u5fc5\u8981\u7684\u6570\u636e\u548c\u79d1\u5b66\u52a8\u529b\uff0c\u4ece\u800c\u5438\u5f15\u6765\u81ea\u7f8e\u56fd\u56fd\u7acb\u536b\u751f\u7814\u7a76\u9662\u7b49\u673a\u6784\u7684\u66f4\u591a\u91cd\u8981\u8d44\u91d1\u3002.<\/span><\/p>\n

\"A
\u5a01\u5ec9\u6700\u8fd1\u521a\u6ee12\u5c81\u3002\u4ed6\u7684\u5bb6\u4eba\u7ee7\u7eed\u4e3a\u80be\u4e0a\u817a\u8111\u767d\u8d28\u8425\u517b\u4e0d\u826f\u75c7\uff08ALD\uff09\u7684\u7814\u7a76\u7b79\u96c6\u8d44\u91d1\uff0c\u4ee5\u5e2e\u52a9\u6240\u6709\u60a3\u6709\u8fd9\u79cd\u7f55\u89c1\u75be\u75c5\u7684\u513f\u7ae5\u62e5\u6709\u7f8e\u597d\u7684\u672a\u6765\u3002.<\/figcaption><\/figure>\n

\u5728\u5fb7\u514b\u8428\u65af\u5dde\u8fbe\u62c9\u65af\u7684\u5bb6\u4e2d\uff0c\u5a01\u5ec9\u6700\u8fd1\u521a\u6ee1\u4e24\u5c81\uff0c\u4ed6\u8301\u58ee\u6210\u957f\u3002\u4ed6\u559c\u6b22\u6237\u5916\u6d3b\u52a8\u3001\u6253\u68d2\u7403\uff08\u4ed6\u79f0\u4e4b\u4e3a\u201cwhack\u201d\uff09\u3001\u770b\u6a44\u6984\u7403\u6bd4\u8d5b\uff0c\u4ee5\u53ca\u548c\u4ed6\u7684\u59d0\u59d0\u827e\u739b\u4e00\u8d77\u73a9\u800d\u3002.<\/span>\u00a0<\/span><\/p>\n

\u201c\u4ed6\u98ce\u8da3\u5e7d\u9ed8\u3001\u5145\u6ee1\u7231\u5fc3\u3001\u5feb\u4e50\u65e0\u6bd4\uff0c\u8fd9\u6b63\u662f\u6211\u4eec\u524d\u8fdb\u7684\u52a8\u529b\uff0c\u201d\u6cf0\u52d2\u8bf4\u3002\u201c\u770b\u5230\u4ed6\u8fd9\u6837\uff0c\u6211\u4eec\u600e\u80fd\u4e0d\u7aed\u5c3d\u5168\u529b\u53bb\u4fdd\u62a4\u4ed6\u7684\u672a\u6765\u5462\uff1f\u201d<\/span>\u00a0<\/span><\/p>","protected":false},"excerpt":{"rendered":"

Will to Cure ALD began with one family\u2019s journey. When Tyler and Taylor Hall welcomed their son, William, a routine newborn screening revealed he had…<\/p>","protected":false},"author":8,"featured_media":24193,"comment_status":"closed","ping_status":"closed","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":[21,164],"class_list":["post-24192","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-donor-stories","category-research"],"acf":[],"yoast_head":"\nTurning Hope Into Action\u00a0 - Lucile Packard Foundation for Children's Health<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/lpfch.org\/zh\/impact-stories\/turning-hope-into-action\/\" \/>\n<meta property=\"og:locale\" content=\"zh_CN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Turning Hope Into Action\u00a0\" \/>\n<meta property=\"og:description\" content=\"Will to Cure ALD began with one family\u2019s journey. 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