{"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\/es\/impact-stories\/turning-hope-into-action\/","title":{"rendered":"Convertir la esperanza en acci\u00f3n.\u00a0"},"content":{"rendered":"

La iniciativa Will to Cure ALD comenz\u00f3 con la experiencia de una familia. Cuando Tyler y Taylor Hall dieron la bienvenida a su hijo, William, una prueba de detecci\u00f3n neonatal de rutina revel\u00f3 que ten\u00eda adrenoleucodistrofia (ALD), una enfermedad gen\u00e9tica rara que puede afectar el cerebro, la m\u00e9dula espinal y el sistema suprarrenal.<\/span>\u00a0<\/span><\/p>\n

W<\/span>Cuando supieron que no exist\u00eda cura y que la financiaci\u00f3n para la investigaci\u00f3n de la ALD era limitada, los Hall decidieron actuar. Fundaron <\/span>Voluntad de curar la ALD<\/span><\/a>\u00a0a finales de 2024 para garantizar que ninguna familia tenga que afrontar este diagn\u00f3stico sin esperanza.<\/span>\u00a0<\/span><\/p>\n

La pareja ha recaudado m\u00e1s de 2,6 millones de d\u00f3lares gracias a familiares y amigos que se han volcado en su misi\u00f3n. Con esos fondos, su fundaci\u00f3n don\u00f3 recientemente 175\u00a0000 d\u00f3lares a la Facultad de Medicina de Stanford para impulsar tres proyectos de investigaci\u00f3n centrados en la ALD. Tambi\u00e9n financiaron proyectos en otros cinco centros de excelencia en ALD en todo el pa\u00eds.<\/span>\u00a0<\/span><\/p>\n

\u201cAl reunir a las mentes m\u00e1s brillantes en este campo, estamos acelerando los plazos para lograr avances que salven vidas y brindando una esperanza tangible a las familias que esperan respuestas\u201d, dice Tyler.<\/span>\u00a0<\/span><\/p>\n

At Stanford, Will to Cure ALD chose to support <\/span>Keith Van Haren, MD<\/span><\/a>, profesor asociado de neurolog\u00eda y l\u00edder nacional en investigaci\u00f3n sobre ALD, quien dirige el <\/span>Laboratorio Van Haren<\/span><\/a>.Su investigaci\u00f3n<\/span>\u00a0ha llevado a un descubrimiento emocionante e inesperado.<\/span>.<\/span>\u00a0<\/span><\/p>\n

\u201cEn nuestro modelo de rat\u00f3n, detectamos una fuerte activaci\u00f3n de una v\u00eda inmunitaria que no se hab\u00eda relacionado previamente con la ALD\u201d, afirma Van Haren. \u201cEste hallazgo nos permite investigar si esa misma caracter\u00edstica existe en ni\u00f1os con la enfermedad y, de ser as\u00ed, si existen f\u00e1rmacos o terapias diet\u00e9ticas que puedan reutilizarse r\u00e1pidamente para ni\u00f1os afectados por la ALD\u201d.\u201d<\/span>\u00a0<\/span><\/p>\n

En definitiva, los Hall conf\u00edan en que esta investigaci\u00f3n generar\u00e1 los datos y el impulso cient\u00edfico necesarios para atraer una financiaci\u00f3n m\u00e1s significativa de fuentes como los Institutos Nacionales de la Salud.<\/span><\/p>\n

\"A
William cumpli\u00f3 recientemente 2 a\u00f1os. Su familia sigue recaudando fondos para la investigaci\u00f3n de la ALD con el fin de ayudar a todos los ni\u00f1os que padecen esta enfermedad rara a tener un futuro prometedor.<\/figcaption><\/figure>\n

En la casa familiar en Dallas, Texas, William cumpli\u00f3 recientemente dos a\u00f1os y est\u00e1 creciendo muy bien. Le encanta estar al aire libre, jugar al b\u00e9isbol (al que \u00e9l llama "whack"), ver f\u00fatbol americano y seguirle el ritmo a su hermana mayor, Emma.<\/span>\u00a0<\/span><\/p>\n

\u201cEs gracioso, cari\u00f1oso y feliz, y eso es precisamente lo que nos motiva\u201d, dice Tyler. \u201cVerlo as\u00ed hace que nos resulte imposible no hacer todo lo posible por proteger su futuro\u201d.\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\/es\/impact-stories\/turning-hope-into-action\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\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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