{"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\/ko\/impact-stories\/turning-hope-into-action\/","title":{"rendered":"\ud76c\ub9dd\uc744 \ud589\ub3d9\uc73c\ub85c \uc62e\uae30\uae30\u00a0"},"content":{"rendered":"

Will to Cure ALD\ub294 \ud55c \uac00\uc871\uc758 \uc5ec\uc815\uc5d0\uc11c \uc2dc\uc791\ub418\uc5c8\uc2b5\ub2c8\ub2e4. \ud0c0\uc77c\ub7ec\uc640 \ud14c\uc77c\ub7ec \ud640 \ubd80\ubd80\ub294 \uc544\ub4e4 \uc70c\ub9ac\uc5c4\uc744 \ub9de\uc774\ud588\ub294\ub370, \uc2e0\uc0dd\uc544 \uc815\uae30 \uac80\uc9c4\uc5d0\uc11c \ub1cc, \ucc99\uc218, \ubd80\uc2e0\uc5d0 \uc601\ud5a5\uc744 \ubbf8\uce60 \uc218 \uc788\ub294 \ud76c\uadc0 \uc720\uc804 \uc9c8\ud658\uc778 \ubd80\uc2e0\ubc31\uc9c8\uc774\uc601\uc591\uc99d(ALD)\uc774 \ubc1c\uacac\ub418\uc5c8\uc2b5\ub2c8\ub2e4.<\/span>\u00a0<\/span><\/p>\n

W<\/span>ALD\uc5d0 \ub300\ud55c \uce58\ub8cc\ubc95\uc774 \uc5c6\uace0 \uc5f0\uad6c \uc790\uae08\ub3c4 \ubd80\uc871\ud558\ub2e4\ub294 \uc0ac\uc2e4\uc744 \uc54c\uac8c \ub41c \ud640 \ubd80\ubd80\ub294 \ud589\ub3d9\uc5d0 \ub098\uc11c\uae30\ub85c \uacb0\uc2ec\ud588\uc2b5\ub2c8\ub2e4. \uadf8\ub4e4\uc740 \uc790\uc120 \ub2e8\uccb4\ub97c \uc124\ub9bd\ud588\uc2b5\ub2c8\ub2e4. <\/span>ALD\ub97c \uce58\ub8cc\ud558\ub824\ub294 \uc758\uc9c0<\/span><\/a>\u00a02024\ub144 \ub9d0\uae4c\uc9c0 \uc5b4\ub5a4 \uac00\uc871\ub3c4 \ud76c\ub9dd \uc5c6\uc774 \uc774\ub7ec\ud55c \uc9c4\ub2e8\uc744 \uacbd\ud5d8\ud558\uc9c0 \uc54a\ub3c4\ub85d \ud558\uae30 \uc704\ud568\uc785\ub2c8\ub2e4.<\/span>\u00a0<\/span><\/p>\n

\uc774 \ubd80\ubd80\ub294 \uac00\uc871\uacfc \uce5c\uad6c\ub4e4\uc758 \uc9c0\uc9c0\ub97c \ubc1b\uc544 260\ub9cc \ub2ec\ub7ec \uc774\uc0c1\uc744 \ubaa8\uae08\ud588\uc2b5\ub2c8\ub2e4. \uc774 \uae30\uae08\uc744 \ubc14\ud0d5\uc73c\ub85c \uc7ac\ub2e8\uc740 \ucd5c\uadfc \uc2a4\ud0e0\ud37c\ub4dc \uc758\uacfc\ub300\ud559\uc5d0 17\ub9cc 5\ucc9c \ub2ec\ub7ec\ub97c \uc9c0\uc6d0\ud558\uc5ec ALD \uad00\ub828 \uc5f0\uad6c \ud504\ub85c\uc81d\ud2b8 \uc138 \uac00\uc9c0\ub97c \ubc1c\uc804\uc2dc\ud0a4\ub294 \ub370 \ub3c4\uc6c0\uc744 \uc8fc\uc5c8\uc2b5\ub2c8\ub2e4. \ub610\ud55c \uc804\uad6d\uc5d0 \uc788\ub294 \ub2e4\ub978 5\uac1c\uc758 ALD \uc804\ubb38 \uc5f0\uad6c \uc13c\ud130\uc5d0\ub3c4 \uc790\uae08\uc744 \uc9c0\uc6d0\ud588\uc2b5\ub2c8\ub2e4.<\/span>\u00a0<\/span><\/p>\n

\u201c\ud0c0\uc77c\ub7ec\ub294 \u201d\uc774 \ubd84\uc57c\uc5d0\uc11c \uac00\uc7a5 \ub6f0\uc5b4\ub09c \uc778\uc7ac\ub4e4\uc744 \ud55c\ub370 \ubaa8\uc74c\uc73c\ub85c\uc368 \uc0dd\uba85\uc744 \uad6c\ud558\ub294 \ud68d\uae30\uc801\uc778 \ubc1c\uacac\uc758 \uc2dc\uae30\ub97c \uc55e\ub2f9\uae30\uace0 \ud574\ub2f5\uc744 \uae30\ub2e4\ub9ac\ub294 \uac00\uc871\ub4e4\uc5d0\uac8c \uc2e4\uc9c8\uc801\uc778 \ud76c\ub9dd\uc744 \uc120\uc0ac\ud558\uace0 \uc788\uc2b5\ub2c8\ub2e4.\u201d\ub77c\uace0 \ub9d0\ud569\ub2c8\ub2e4.<\/span>\u00a0<\/span><\/p>\n

\uc2a4\ud0e0\ud3ec\ub4dc\uc5d0\uc11c Will to Cure ALD\ub294 \ub2e4\uc74c\uacfc \uac19\uc740 \ud65c\ub3d9\uc744 \uc9c0\uc6d0\ud558\uae30\ub85c \uacb0\uc815\ud588\uc2b5\ub2c8\ub2e4. <\/span>\ud0a4\uc2a4 \ubc34 \ud558\ub80c, \uc758\ud559\ubc15\uc0ac<\/span><\/a>, \uc2e0\uacbd\ud559 \ubd80\uad50\uc218\uc774\uc790 ALD \uc5f0\uad6c \ubd84\uc57c\uc758 \uad6d\uac00\uc801 \ub9ac\ub354\uc778 \uadf8\ub294 \ub2e4\uc74c\uc744 \uc774\ub04c\uace0 \uc788\uc2b5\ub2c8\ub2e4. <\/span>\ubc18 \ud558\ub80c \uc5f0\uad6c\uc2e4<\/span><\/a>.\uadf8\ub4e4\uc758 \uc5f0\uad6c<\/span>\u00a0\uc774\ub294 \ud765\ubbf8\ub86d\uace0 \uc608\uc0c1\uce58 \ubabb\ud55c \ubc1c\uacac\uc73c\ub85c \uc774\uc5b4\uc84c\uc2b5\ub2c8\ub2e4.<\/span>.<\/span>\u00a0<\/span><\/p>\n

\u201c"\uc800\ud76c\ub294 \uc950 \ubaa8\ub378\uc5d0\uc11c \uc774\uc804\uc5d0\ub294 ALD\uc640 \uc5f0\uad00\ub418\uc9c0 \uc54a\uc558\ub358 \uba74\uc5ed \uacbd\ub85c\uc758 \uac15\ub825\ud55c \ud65c\uc131\ud654\ub97c \ubc1c\uacac\ud588\uc2b5\ub2c8\ub2e4."\ub77c\uace0 \ubc18 \ud558\ub80c\uc740 \ub9d0\ud569\ub2c8\ub2e4. "\uc774\ubc88 \uae30\uc99d\uc744 \ud1b5\ud574 \uc800\ud76c\ub294 \uc774\uc640 \ub3d9\uc77c\ud55c \ud2b9\uc9d5\uc774 ALD\ub97c \uc553\ub294 \uc5b4\ub9b0\uc774\ub4e4\uc5d0\uac8c\uc11c\ub3c4 \ub098\ud0c0\ub098\ub294\uc9c0, \uadf8\ub9ac\uace0 \ub9cc\uc57d \uadf8\ub807\ub2e4\uba74 ALD\ub97c \uc553\ub294 \uc18c\ub144\ub4e4\uc744 \uc704\ud574 \uc2e0\uc18d\ud558\uac8c \uc6a9\ub3c4\ub97c \ubcc0\uacbd\ud560 \uc218 \uc788\ub294 \uae30\uc874 \uc57d\ubb3c\uc774\ub098 \uc2dd\uc774 \uc694\ubc95\uc774 \uc788\ub294\uc9c0 \uc5f0\uad6c\ud560 \uc218 \uc788\uac8c \ub418\uc5c8\uc2b5\ub2c8\ub2e4."\u201d<\/span>\u00a0<\/span><\/p>\n

\uad81\uadf9\uc801\uc73c\ub85c \ud640 \ubd80\ubd80\ub294 \uc774 \uc5f0\uad6c\uac00 \uad6d\ub9bd\ubcf4\uac74\uc6d0\uacfc \uac19\uc740 \uae30\uad00\uc73c\ub85c\ubd80\ud130 \ub354 \ud070 \uaddc\ubaa8\uc758 \uc790\uae08\uc744 \uc720\uce58\ud558\ub294 \ub370 \ud544\uc694\ud55c \ub370\uc774\ud130\uc640 \uacfc\ud559\uc801 \ucd94\uc9c4\ub825\uc744 \ucc3d\ucd9c\ud560 \uc218 \uc788\uc744 \uac83\uc774\ub77c\uace0 \ub099\uad00\ud558\uace0 \uc788\uc2b5\ub2c8\ub2e4.<\/span><\/p>\n

\"A
\uc70c\ub9ac\uc5c4\uc740 \ucd5c\uadfc \ub450 \uc0b4\uc774 \ub418\uc5c8\uc2b5\ub2c8\ub2e4. \uadf8\uc758 \uac00\uc871\uc740 \uc774 \ud76c\uadc0 \uc9c8\ud658\uc744 \uc553\uace0 \uc788\ub294 \ubaa8\ub4e0 \uc5b4\ub9b0\uc774\ub4e4\uc774 \ubc1d\uc740 \ubbf8\ub798\ub97c \uac00\uc9c8 \uc218 \uc788\ub3c4\ub85d ALD \uc5f0\uad6c\ub97c \uc704\ud55c \uae30\uae08 \ub9c8\ub828 \ud65c\ub3d9\uc744 \uacc4\uc18d\ud558\uace0 \uc788\uc2b5\ub2c8\ub2e4.<\/figcaption><\/figure>\n

\ud14d\uc0ac\uc2a4\uc8fc \ub308\ub7ec\uc2a4\uc5d0 \uc788\ub294 \uac00\uc871\uc758 \uc9d1\uc5d0\uc11c \uc70c\ub9ac\uc5c4\uc740 \ucd5c\uadfc \ub450 \uc0b4\uc774 \ub418\uc5c8\uace0, \uac74\uac15\ud558\uac8c \uc798 \uc790\ub77c\uace0 \uc788\uc2b5\ub2c8\ub2e4. \uadf8\ub294 \uc57c\uc678 \ud65c\ub3d9, \uc57c\uad6c(\uadf8\ub294 \uc57c\uad6c\ub97c "\uc65d"\uc774\ub77c\uace0 \ubd80\ub985\ub2c8\ub2e4), \ubbf8\uc2dd\ucd95\uad6c \uc2dc\uccad, \uadf8\ub9ac\uace0 \ub204\ub098 \uc5e0\ub9c8\ub97c \ub530\ub77c\ub2e4\ub2c8\ub294 \uac83\uc744 \uc88b\uc544\ud569\ub2c8\ub2e4.<\/span>\u00a0<\/span><\/p>\n

\u201c\ud0c0\uc77c\ub7ec\ub294 "\uadf8\ub294 \uc7ac\ubc0c\uace0, \uc0ac\ub791\uc2a4\ub7fd\uace0, \ud589\ubcf5\ud55c \uc544\uc774\uc608\uc694. \ubc14\ub85c \uadf8\ub7f0 \ubaa8\uc2b5\uc774 \uc6b0\ub9ac\uc5d0\uac8c \ud798\uc744 \uc8fc\ub294 \uc6d0\ub3d9\ub825\uc785\ub2c8\ub2e4."\ub77c\uace0 \ub9d0\ud558\uba70, "\uadf8\ub7f0 \ubaa8\uc2b5\uc744 \ubcf4\uba74 \uadf8\uc758 \ubbf8\ub798\ub97c \uc9c0\ud0a4\uae30 \uc704\ud574 \uc6b0\ub9ac\uac00 \ud560 \uc218 \uc788\ub294 \ubaa8\ub4e0 \uac83\uc744 \ub2e4 \ud558\uc9c0 \uc54a\uc744 \uc218 \uc5c6\uac8c \ub3fc\uc694."\ub77c\uace0 \ub367\ubd99\uc600\ub2e4.\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\/ko\/impact-stories\/turning-hope-into-action\/\" \/>\n<meta property=\"og:locale\" content=\"ko_KR\" \/>\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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