{"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\/ja\/impact-stories\/turning-hope-into-action\/","title":{"rendered":"\u5e0c\u671b\u3092\u884c\u52d5\u306b\u79fb\u3059\u00a0"},"content":{"rendered":"

\u300cALD\u3092\u6cbb\u3059\u610f\u5fd7\u300d\u306f\u3001\u3042\u308b\u5bb6\u65cf\u306e\u6b69\u307f\u304b\u3089\u59cb\u307e\u3063\u305f\u3002\u30bf\u30a4\u30e9\u30fc\u3068\u30c6\u30a4\u30e9\u30fc\u30fb\u30db\u30fc\u30eb\u592b\u59bb\u306b\u606f\u5b50\u30a6\u30a3\u30ea\u30a2\u30e0\u304c\u751f\u307e\u308c\u305f\u969b\u3001\u65b0\u751f\u5150\u30b9\u30af\u30ea\u30fc\u30cb\u30f3\u30b0\u691c\u67fb\u3067\u3001\u5f7c\u304c\u526f\u814e\u767d\u8cea\u30b8\u30b9\u30c8\u30ed\u30d5\u30a3\u30fc\uff08ALD\uff09\u3067\u3042\u308b\u3053\u3068\u304c\u5224\u660e\u3057\u305f\u3002ALD\u306f\u3001\u8133\u3001\u810a\u9ac4\u3001\u526f\u814e\u7cfb\u306b\u5f71\u97ff\u3092\u4e0e\u3048\u308b\u53ef\u80fd\u6027\u306e\u3042\u308b\u7a00\u306a\u907a\u4f1d\u6027\u75be\u60a3\u3067\u3042\u308b\u3002.<\/span>\u00a0<\/span><\/p>\n

W<\/span>ALD\u306e\u6cbb\u7642\u6cd5\u304c\u5b58\u5728\u305b\u305a\u3001\u7814\u7a76\u8cc7\u91d1\u3082\u9650\u3089\u308c\u3066\u3044\u308b\u3053\u3068\u3092\u77e5\u3063\u305f\u30db\u30fc\u30eb\u592b\u59bb\u306f\u3001\u884c\u52d5\u3092\u8d77\u3053\u3059\u3053\u3068\u3092\u6c7a\u610f\u3057\u305f\u3002\u5f7c\u3089\u306f <\/span>ALD\u3092\u6cbb\u3057\u305f\u3044\u3068\u3044\u3046\u610f\u5fd7<\/span><\/a>\u00a02024\u5e74\u5f8c\u534a\u306b\u3001\u3069\u306e\u5bb6\u65cf\u3082\u5e0c\u671b\u3092\u5931\u3063\u3066\u3053\u306e\u8a3a\u65ad\u3092\u53d7\u3051\u308b\u3053\u3068\u304c\u306a\u3044\u3088\u3046\u306b\u3059\u308b\u305f\u3081\u3002.<\/span>\u00a0<\/span><\/p>\n

\u592b\u59bb\u306f\u3001\u305d\u306e\u6d3b\u52d5\u3092\u652f\u63f4\u3059\u308b\u5bb6\u65cf\u3084\u53cb\u4eba\u304b\u30891260\u4e07\u30c9\u30eb\u4ee5\u4e0a\u3092\u96c6\u3081\u305f\u3002\u305d\u306e\u8cc7\u91d1\u304b\u3089\u3001\u592b\u59bb\u306e\u8ca1\u56e3\u306f\u6700\u8fd1\u3001ALD\uff08\u526f\u814e\u767d\u8cea\u30b8\u30b9\u30c8\u30ed\u30d5\u30a3\u30fc\uff09\u306b\u7126\u70b9\u3092\u5f53\u3066\u305f3\u3064\u306e\u7814\u7a76\u30d7\u30ed\u30b8\u30a7\u30af\u30c8\u3092\u63a8\u9032\u3059\u308b\u305f\u3081\u3001\u30b9\u30bf\u30f3\u30d5\u30a9\u30fc\u30c9\u5927\u5b66\u533b\u5b66\u90e8\u306b17\u4e075000\u30c9\u30eb\u3092\u5bc4\u4ed8\u3057\u305f\u3002\u307e\u305f\u3001\u5168\u7c73\u5404\u5730\u306b\u3042\u308b\u4ed6\u306e5\u3064\u306eALD\u5c02\u9580\u7814\u7a76\u30bb\u30f3\u30bf\u30fc\u306e\u30d7\u30ed\u30b8\u30a7\u30af\u30c8\u306b\u3082\u8cc7\u91d1\u3092\u63d0\u4f9b\u3057\u305f\u3002.<\/span>\u00a0<\/span><\/p>\n

\u201c\u300c\u3053\u306e\u5206\u91ce\u3067\u6700\u3082\u512a\u79c0\u306a\u4eba\u6750\u3092\u7d50\u96c6\u3059\u308b\u3053\u3068\u3067\u3001\u547d\u3092\u6551\u3046\u753b\u671f\u7684\u306a\u767a\u898b\u307e\u3067\u306e\u671f\u9593\u3092\u77ed\u7e2e\u3057\u3001\u7b54\u3048\u3092\u5f85\u3061\u671b\u3080\u5bb6\u65cf\u306b\u5177\u4f53\u7684\u306a\u5e0c\u671b\u3092\u3082\u305f\u3089\u3059\u3053\u3068\u304c\u3067\u304d\u308b\u300d\u3068\u30bf\u30a4\u30e9\u30fc\u306f\u8ff0\u3079\u3066\u3044\u308b\u3002.<\/span>\u00a0<\/span><\/p>\n

\u30b9\u30bf\u30f3\u30d5\u30a9\u30fc\u30c9\u5927\u5b66\u3067\u306f\u3001Will to Cure ALD\u304c\u652f\u63f4\u3059\u308b\u3053\u3068\u3092\u9078\u629e\u3057\u305f\u3002 <\/span>\u30ad\u30fc\u30b9\u30fb\u30f4\u30a1\u30f3\u30fb\u30cf\u30fc\u30ec\u30f3\u533b\u5e2b<\/span><\/a>, \u795e\u7d4c\u5b66\u306e\u51c6\u6559\u6388\u3067\u3042\u308a\u3001ALD\u7814\u7a76\u306e\u56fd\u5185\u30ea\u30fc\u30c0\u30fc\u3067\u3082\u3042\u308b\u5f7c\u306f\u3001 <\/span>\u30f4\u30a1\u30f3\u30fb\u30cf\u30fc\u30ec\u30f3\u7814\u7a76\u6240<\/span><\/a>.\u5f7c\u3089\u306e\u7814\u7a76<\/span>\u00a0\u523a\u6fc0\u7684\u3067\u4e88\u60f3\u5916\u306e\u767a\u898b\u306b\u3064\u306a\u304c\u3063\u305f<\/span>.<\/span>\u00a0<\/span><\/p>\n

\u201c\u300c\u79c1\u305f\u3061\u306e\u30de\u30a6\u30b9\u30e2\u30c7\u30eb\u3067\u306f\u3001\u3053\u308c\u307e\u3067ALD\u3068\u306e\u95a2\u9023\u304c\u6307\u6458\u3055\u308c\u3066\u3044\u306a\u304b\u3063\u305f\u514d\u75ab\u7d4c\u8def\u306e\u5f37\u3044\u6d3b\u6027\u5316\u304c\u898b\u3089\u308c\u307e\u3057\u305f\u300d\u3068\u30f4\u30a1\u30f3\u30fb\u30cf\u30fc\u30ec\u30f3\u6c0f\u306f\u8ff0\u3079\u3066\u3044\u307e\u3059\u3002\u300c\u4eca\u56de\u306e\u5bc4\u8d08\u306b\u3088\u308a\u3001\u540c\u3058\u7279\u5fb4\u304cALD\u306e\u5c0f\u5150\u306b\u3082\u898b\u3089\u308c\u308b\u304b\u3069\u3046\u304b\u3001\u305d\u3057\u3066\u3082\u3057\u898b\u3089\u308c\u308b\u306e\u3067\u3042\u308c\u3070\u3001ALD\u306b\u7f79\u60a3\u3057\u305f\u7537\u5150\u306e\u305f\u3081\u306b\u65e2\u5b58\u306e\u85ac\u5264\u3084\u98df\u4e8b\u7642\u6cd5\u3092\u8fc5\u901f\u306b\u8ee2\u7528\u3067\u304d\u308b\u304b\u3069\u3046\u304b\u3092\u691c\u8a0e\u3059\u308b\u3053\u3068\u304c\u3067\u304d\u307e\u3059\u3002\u300d\u201d<\/span>\u00a0<\/span><\/p>\n

\u6700\u7d42\u7684\u306b\u3001\u30db\u30fc\u30eb\u592b\u59bb\u306f\u3053\u306e\u7814\u7a76\u304c\u3001\u56fd\u7acb\u885b\u751f\u7814\u7a76\u6240\u306e\u3088\u3046\u306a\u6a5f\u95a2\u304b\u3089\u3088\u308a\u591a\u984d\u306e\u8cc7\u91d1\u3092\u5f15\u304d\u4ed8\u3051\u308b\u305f\u3081\u306b\u5fc5\u8981\u306a\u30c7\u30fc\u30bf\u3068\u79d1\u5b66\u7684\u306a\u52e2\u3044\u3092\u751f\u307f\u51fa\u3059\u3068\u697d\u89b3\u8996\u3057\u3066\u3044\u308b\u3002.<\/span><\/p>\n

\"A
\u30a6\u30a3\u30ea\u30a2\u30e0\u541b\u306f\u5148\u65e52\u6b73\u306b\u306a\u308a\u307e\u3057\u305f\u3002\u5f7c\u306e\u5bb6\u65cf\u306f\u3001\u3053\u306e\u5e0c\u5c11\u75be\u60a3\u3092\u62b1\u3048\u308b\u3059\u3079\u3066\u306e\u5b50\u3069\u3082\u305f\u3061\u304c\u660e\u308b\u3044\u672a\u6765\u3092\u7bc9\u3051\u308b\u3088\u3046\u3001ALD\uff08\u526f\u814e\u767d\u8cea\u30b8\u30b9\u30c8\u30ed\u30d5\u30a3\u30fc\uff09\u306e\u7814\u7a76\u8cc7\u91d1\u3092\u96c6\u3081\u308b\u6d3b\u52d5\u3092\u7d9a\u3051\u3066\u3044\u307e\u3059\u3002.<\/figcaption><\/figure>\n

\u30c6\u30ad\u30b5\u30b9\u5dde\u30c0\u30e9\u30b9\u306b\u3042\u308b\u4e00\u5bb6\u306e\u81ea\u5b85\u3067\u3001\u30a6\u30a3\u30ea\u30a2\u30e0\u541b\u306f\u5148\u65e52\u6b73\u306e\u8a95\u751f\u65e5\u3092\u8fce\u3048\u3001\u3059\u304f\u3059\u304f\u3068\u6210\u9577\u3057\u3066\u3044\u308b\u3002\u5f7c\u306f\u5916\u3067\u904a\u3076\u3053\u3068\u3001\u91ce\u7403\uff08\u672c\u4eba\u306f\u300c\u30ef\u30c3\u30af\u300d\u3068\u547c\u3093\u3067\u3044\u308b\uff09\u3092\u3059\u308b\u3053\u3068\u3001\u30d5\u30c3\u30c8\u30dc\u30fc\u30eb\u3092\u89b3\u6226\u3059\u308b\u3053\u3068\u3001\u305d\u3057\u3066\u59c9\u306e\u30a8\u30de\u3061\u3083\u3093\u306b\u3064\u3044\u3066\u3044\u304f\u3053\u3068\u304c\u5927\u597d\u304d\u3060\u3002.<\/span>\u00a0<\/span><\/p>\n

\u201c\u300c\u5f7c\u306f\u9762\u767d\u304f\u3066\u3001\u611b\u60c5\u6df1\u304f\u3066\u3001\u5e78\u305b\u305d\u3046\u3067\u3001\u307e\u3055\u306b\u305d\u308c\u304c\u79c1\u305f\u3061\u306e\u539f\u52d5\u529b\u306a\u3093\u3067\u3059\u300d\u3068\u30bf\u30a4\u30e9\u30fc\u306f\u8a00\u3046\u3002\u300c\u5f7c\u304c\u305d\u3093\u306a\u98a8\u306b\u632f\u308b\u821e\u3046\u306e\u3092\u898b\u308b\u3068\u3001\u5f7c\u306e\u672a\u6765\u3092\u5b88\u308b\u305f\u3081\u306b\u3067\u304d\u308b\u9650\u308a\u306e\u3053\u3068\u3092\u3059\u308b\u4ee5\u5916\u306b\u9078\u629e\u80a2\u306f\u306a\u3044\u3068\u601d\u3046\u3093\u3067\u3059\u3002\u300d\u201d<\/span>\u00a0<\/span><\/p>","protected":false},"excerpt":{"rendered":"

\u300cALD\u6cbb\u7642\u3078\u306e\u610f\u5fd7\u300d\u306f\u3001\u3042\u308b\u5bb6\u65cf\u306e\u6b69\u307f\u304b\u3089\u59cb\u307e\u3063\u305f\u3002\u30bf\u30a4\u30e9\u30fc\u3068\u30c6\u30a4\u30e9\u30fc\u30fb\u30db\u30fc\u30eb\u592b\u59bb\u304c\u606f\u5b50\u30a6\u30a3\u30ea\u30a2\u30e0\u3092\u8fce\u3048\u305f\u6642\u3001\u65b0\u751f\u5150\u30b9\u30af\u30ea\u30fc\u30cb\u30f3\u30b0\u691c\u67fb\u3067\u5f7c\u304cALD\u3092\u60a3\u3063\u3066\u3044\u308b\u3053\u3068\u304c\u5224\u660e\u3057\u305f\u2026\u3002<\/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\/ja\/impact-stories\/turning-hope-into-action\/\" \/>\n<meta property=\"og:locale\" content=\"ja_JP\" \/>\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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