{"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\/vi\/impact-stories\/turning-hope-into-action\/","title":{"rendered":"Bi\u1ebfn hy v\u1ecdng th\u00e0nh h\u00e0nh \u0111\u1ed9ng\u00a0"},"content":{"rendered":"

T\u1ed5 ch\u1ee9c Will to Cure ALD b\u1eaft \u0111\u1ea7u t\u1eeb h\u00e0nh tr\u00ecnh c\u1ee7a m\u1ed9t gia \u0111\u00ecnh. Khi Tyler v\u00e0 Taylor Hall ch\u00e0o \u0111\u00f3n con trai William, m\u1ed9t x\u00e9t nghi\u1ec7m s\u00e0ng l\u1ecdc s\u01a1 sinh \u0111\u1ecbnh k\u1ef3 \u0111\u00e3 ph\u00e1t hi\u1ec7n c\u1eadu b\u00e9 m\u1eafc b\u1ec7nh adrenoleukodystrophy (ALD) - m\u1ed9t c\u0103n b\u1ec7nh di truy\u1ec1n hi\u1ebfm g\u1eb7p c\u00f3 th\u1ec3 \u1ea3nh h\u01b0\u1edfng \u0111\u1ebfn n\u00e3o, t\u1ee7y s\u1ed1ng v\u00e0 h\u1ec7 th\u1ed1ng tuy\u1ebfn th\u01b0\u1ee3ng th\u1eadn.<\/span>\u00a0<\/span><\/p>\n

W<\/span>Khi bi\u1ebft r\u1eb1ng kh\u00f4ng c\u00f3 ph\u01b0\u01a1ng ph\u00e1p ch\u1eefa tr\u1ecb n\u00e0o v\u00e0 ngu\u1ed3n kinh ph\u00ed nghi\u00ean c\u1ee9u cho ALD r\u1ea5t h\u1ea1n ch\u1ebf, gia \u0111\u00ecnh Hall \u0111\u00e3 quy\u1ebft \u0111\u1ecbnh h\u00e0nh \u0111\u1ed9ng. H\u1ecd th\u00e0nh l\u1eadp m\u1ed9t t\u1ed5 ch\u1ee9c. <\/span>\u00dd ch\u00ed ch\u1eefa tr\u1ecb b\u1ec7nh ALD<\/span><\/a>\u00a0V\u00e0o cu\u1ed1i n\u0103m 2024, ch\u00fang t\u00f4i cam k\u1ebft kh\u00f4ng \u0111\u1ec3 gia \u0111\u00ecnh n\u00e0o ph\u1ea3i tr\u1ea3i qua ch\u1ea9n \u0111o\u00e1n n\u00e0y trong tuy\u1ec7t v\u1ecdng.<\/span>\u00a0<\/span><\/p>\n

C\u1eb7p \u0111\u00f4i n\u00e0y \u0111\u00e3 quy\u00ean g\u00f3p \u0111\u01b0\u1ee3c h\u01a1n 2,6 tri\u1ec7u b\u1ea3ng Anh t\u1eeb gia \u0111\u00ecnh v\u00e0 b\u1ea1n b\u00e8, nh\u1eefng ng\u01b0\u1eddi \u0111\u00e3 \u1ee7ng h\u1ed9 s\u1ee9 m\u1ec7nh c\u1ee7a h\u1ecd. T\u1eeb ngu\u1ed3n t\u00e0i tr\u1ee3 \u0111\u00f3, qu\u1ef9 c\u1ee7a h\u1ecd g\u1ea7n \u0111\u00e2y \u0111\u00e3 trao cho Tr\u01b0\u1eddng Y khoa Stanford 175.000 b\u1ea3ng Anh \u0111\u1ec3 th\u00fac \u0111\u1ea9y ba d\u1ef1 \u00e1n nghi\u00ean c\u1ee9u t\u1eadp trung v\u00e0o b\u1ec7nh ALD. H\u1ecd c\u0169ng t\u00e0i tr\u1ee3 cho c\u00e1c d\u1ef1 \u00e1n t\u1ea1i n\u0103m trung t\u00e2m xu\u1ea5t s\u1eafc kh\u00e1c v\u1ec1 ALD tr\u00ean kh\u1eafp c\u1ea3 n\u01b0\u1edbc.<\/span>\u00a0<\/span><\/p>\n

\u201cB\u1eb1ng c\u00e1ch quy t\u1ee5 nh\u1eefng b\u1ed9 \u00f3c xu\u1ea5t s\u1eafc nh\u1ea5t trong l\u0129nh v\u1ef1c n\u00e0y, ch\u00fang t\u00f4i \u0111ang \u0111\u1ea9y nhanh ti\u1ebfn \u0111\u1ed9 \u0111\u1ea1t \u0111\u01b0\u1ee3c nh\u1eefng \u0111\u1ed9t ph\u00e1 c\u1ee9u s\u1ed1ng v\u00e0 mang l\u1ea1i hy v\u1ecdng thi\u1ebft th\u1ef1c cho c\u00e1c gia \u0111\u00ecnh \u0111ang ch\u1edd \u0111\u1ee3i c\u00e2u tr\u1ea3 l\u1eddi,\u201d Tyler n\u00f3i.<\/span>\u00a0<\/span><\/p>\n

At Stanford, Will to Cure ALD chose to support <\/span>B\u00e1c s\u0129 Keith Van Haren<\/span><\/a>, m\u1ed9t ph\u00f3 gi\u00e1o s\u01b0 th\u1ea7n kinh h\u1ecdc v\u00e0 l\u00e0 nh\u00e0 l\u00e3nh \u0111\u1ea1o qu\u1ed1c gia trong nghi\u00ean c\u1ee9u v\u1ec1 ALD, ng\u01b0\u1eddi \u0111\u1ee9ng \u0111\u1ea7u nh\u00f3m nghi\u00ean c\u1ee9u n\u00e0y. <\/span>Ph\u00f2ng th\u00ed nghi\u1ec7m Van Haren<\/span><\/a>.Nghi\u00ean c\u1ee9u c\u1ee7a h\u1ecd<\/span>\u00a0\u0111\u00e3 d\u1eabn \u0111\u1ebfn m\u1ed9t kh\u00e1m ph\u00e1 th\u00fa v\u1ecb v\u00e0 b\u1ea5t ng\u1edd.<\/span>.<\/span>\u00a0<\/span><\/p>\n

\u201cCh\u00fang t\u00f4i \u0111\u00e3 ph\u00e1t hi\u1ec7n s\u1ef1 k\u00edch ho\u1ea1t m\u1ea1nh m\u1ebd c\u1ee7a m\u1ed9t con \u0111\u01b0\u1eddng mi\u1ec5n d\u1ecbch trong m\u00f4 h\u00ecnh chu\u1ed9t c\u1ee7a m\u00ecnh m\u00e0 tr\u01b0\u1edbc \u0111\u00e2y ch\u01b0a t\u1eebng \u0111\u01b0\u1ee3c li\u00ean k\u1ebft v\u1edbi ALD,\u201d Van Haren n\u00f3i. \u201cM\u00f3n qu\u00e0 n\u00e0y cho ph\u00e9p ch\u00fang t\u00f4i \u0111\u1eb7t c\u00e2u h\u1ecfi li\u1ec7u d\u1ea5u hi\u1ec7u t\u01b0\u01a1ng t\u1ef1 c\u00f3 t\u1ed3n t\u1ea1i \u1edf tr\u1ebb em m\u1eafc b\u1ec7nh hay kh\u00f4ng, v\u00e0 n\u1ebfu c\u00f3, li\u1ec7u c\u00f3 lo\u1ea1i thu\u1ed1c ho\u1eb7c li\u1ec7u ph\u00e1p \u0103n ki\u00eang n\u00e0o hi\u1ec7n c\u00f3 th\u1ec3 nhanh ch\u00f3ng \u0111\u01b0\u1ee3c s\u1eed d\u1ee5ng l\u1ea1i cho c\u00e1c b\u00e9 trai b\u1ecb \u1ea3nh h\u01b0\u1edfng b\u1edfi ALD hay kh\u00f4ng.\u201d<\/span>\u00a0<\/span><\/p>\n

T\u00f3m l\u1ea1i, v\u1ee3 ch\u1ed3ng nh\u00e0 Hall l\u1ea1c quan r\u1eb1ng nghi\u00ean c\u1ee9u n\u00e0y s\u1ebd t\u1ea1o ra d\u1eef li\u1ec7u v\u00e0 \u0111\u1ed9ng l\u1ef1c khoa h\u1ecdc c\u1ea7n thi\u1ebft \u0111\u1ec3 thu h\u00fat ngu\u1ed3n t\u00e0i tr\u1ee3 \u0111\u00e1ng k\u1ec3 h\u01a1n t\u1eeb c\u00e1c ngu\u1ed3n nh\u01b0 Vi\u1ec7n Y t\u1ebf Qu\u1ed1c gia.<\/span><\/p>\n

\"A
William v\u1eeba tr\u00f2n 2 tu\u1ed5i. Gia \u0111\u00ecnh c\u1eadu b\u00e9 ti\u1ebfp t\u1ee5c g\u00e2y qu\u1ef9 cho nghi\u00ean c\u1ee9u v\u1ec1 ALD \u0111\u1ec3 gi\u00fap t\u1ea5t c\u1ea3 tr\u1ebb em m\u1eafc c\u0103n b\u1ec7nh hi\u1ebfm g\u1eb7p n\u00e0y c\u00f3 m\u1ed9t t\u01b0\u01a1ng lai t\u01b0\u01a1i s\u00e1ng.<\/figcaption><\/figure>\n

T\u1ea1i nh\u00e0 c\u1ee7a gia \u0111\u00ecnh \u1edf Dallas, Texas, William v\u1eeba tr\u00f2n 2 tu\u1ed5i v\u00e0 \u0111ang ph\u00e1t tri\u1ec3n r\u1ea5t t\u1ed1t. C\u1eadu b\u00e9 th\u00edch ch\u01a1i ngo\u00e0i tr\u1eddi, ch\u01a1i b\u00f3ng ch\u00e0y\u2014m\u00e0 c\u1eadu g\u1ecdi l\u00e0 \u201cwhack\u201d\u2014xem b\u00f3ng \u0111\u00e1 v\u00e0 theo d\u00f5i ch\u1ecb g\u00e1i Emma c\u1ee7a m\u00ecnh.<\/span>\u00a0<\/span><\/p>\n

\u201cTh\u1eb1ng b\u00e9 vui t\u00ednh, \u0111\u00e1ng y\u00eau v\u00e0 h\u1ea1nh ph\u00fac, \u0111\u00f3 ch\u00ednh l\u00e0 \u0111\u1ed9ng l\u1ef1c th\u00fac \u0111\u1ea9y ch\u00fang t\u00f4i,\u201d Tyler n\u00f3i. \u201cNh\u00ecn th\u1ea5y th\u1eb1ng b\u00e9 nh\u01b0 v\u1eady khi\u1ebfn ch\u00fang t\u00f4i kh\u00f4ng th\u1ec3 n\u00e0o kh\u00f4ng l\u00e0m m\u1ecdi th\u1ee9 c\u00f3 th\u1ec3 \u0111\u1ec3 b\u1ea3o v\u1ec7 t\u01b0\u01a1ng lai c\u1ee7a n\u00f3.\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\/vi\/impact-stories\/turning-hope-into-action\/\" \/>\n<meta property=\"og:locale\" content=\"vi_VN\" \/>\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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