{"id":21149,"date":"2025-05-22T22:29:16","date_gmt":"2025-05-22T22:29:16","guid":{"rendered":"https:\/\/lpfch.org\/?p=21149"},"modified":"2025-05-22T22:31:50","modified_gmt":"2025-05-22T22:31:50","slug":"two-families-with-one-goal-find-bpan-treatments","status":"publish","type":"post","link":"https:\/\/lpfch.org\/es\/impact-stories\/two-families-with-one-goal-find-bpan-treatments\/","title":{"rendered":"Dos familias con un mismo objetivo: encontrar tratamientos para el BPAN"},"content":{"rendered":"<p><span data-contrast=\"auto\">A Zoe, de cuatro a\u00f1os, le encantan los rompecabezas, los paseos en bicicleta y las pel\u00edculas de Disney. <\/span><i><span data-contrast=\"auto\">Congelado<\/span><\/i><span data-contrast=\"auto\">Mientras que Isabel, de 11 a\u00f1os, adora montar a caballo, a Minnie Mouse y a sus dos hermanos menores. Aunque provienen de familias diferentes, Zoe e Isabel comparten m\u00e1s que sus personalidades vibrantes y decididas.<\/span><span data-contrast=\"auto\">Ambos est\u00e1n afrontando la vida con la neurodegeneraci\u00f3n asociada a la prote\u00edna betapropeller (BPAN), una enfermedad neurodegenerativa rara y progresiva.<\/span><span data-ccp-props=\"{&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Con el tiempo, los ni\u00f1os con BPAN pierden gradualmente las habilidades que tanto les cost\u00f3 adquirir, desarrollando diston\u00eda, parkinsonismo y demencia. Ambas familias estaban decididas a encontrar respuestas y un camino a seguir tras el diagn\u00f3stico de sus hijas.<\/span><span data-ccp-props=\"{&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">\u201cNos enteramos de que, debido a que la BPAN es rara, se la considera una &#039;enfermedad hu\u00e9rfana&#039;\u201d, dicen los padres de Isabel, Kathryn y Robert. \u201cPocos m\u00e9dicos la conoc\u00edan y casi no se investigaba para desarrollar tratamientos\u201d.<\/span><span data-ccp-props=\"{&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">En respuesta, la pareja fund\u00f3 Isabel&#039;s Chance, una organizaci\u00f3n sin fines de lucro dedicada a recaudar fondos para la investigaci\u00f3n del BPAN.<\/span><span data-ccp-props=\"{&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Los padres de Zoe, Sherri y Peter, tambi\u00e9n estaban decididos a actuar. Acudieron a la Dra. Juliet Knowles, m\u00e9dica e investigadora de Stanford que hab\u00eda atendido a Zoe. \u00abNo \u00edbamos a aceptar que no existieran tratamientos\u00bb, afirman. \u00abAfortunadamente, la Dra. Knowles compart\u00eda nuestra urgencia y pasi\u00f3n por encontrar soluciones\u00bb.<\/span><span data-ccp-props=\"{&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Sherri y Peter, junto con Isabel&#039;s Chance, realizaron una importante donaci\u00f3n para impulsar la labor de Knowles en la lucha contra el BPAN. Knowles reuni\u00f3 un equipo de investigaci\u00f3n de primer nivel para estudiar el BPAN en c\u00e9lulas humanas y modelos animales, elaborando un plan pionero para identificarlo. <\/span><span data-contrast=\"auto\">posibles tratamientos que podr\u00edan pasar r\u00e1pidamente a ensayos cl\u00ednicos.<\/span><span data-ccp-props=\"{&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Adem\u00e1s de apoyar la investigaci\u00f3n pionera de Knowles sobre BPAN, las familias de Zoe e Isabel se han convertido en incansables defensoras, compartiendo sus historias y este trabajo crucial con sus redes. \u00a1Gracias, Sherri, Peter, Kathryn y Robert! Su dedicaci\u00f3n est\u00e1 acelerando el progreso hacia posibles tratamientos para la BPAN y ofreciendo esperanza a familias como la suya.<\/span><span data-ccp-props=\"{&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>A Zoe, de cuatro a\u00f1os, le encantan los rompecabezas, los paseos en bicicleta y la pel\u00edcula de Disney Frozen, mientras que Isabel, de once a\u00f1os, adora montar a caballo, Minnie Mouse y a sus dos hermanos menores. Aunque\u2026<\/p>","protected":false},"author":7,"featured_media":21155,"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":[200],"class_list":["post-21149","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-thank-you-notes","health_topic-neurology"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.3 (Yoast SEO v27.3) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Two Families With One Goal: Find BPAN Treatments - Lucile Packard Foundation for Children&#039;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\/two-families-with-one-goal-find-bpan-treatments\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Two Families With One Goal: Find BPAN Treatments\" \/>\n<meta property=\"og:description\" content=\"Four-year-old Zoe loves puzzles, bike rides, and the Disney movie Frozen, while 11-year-old Isabel adores horseback riding, Minnie Mouse, and her two younger siblings. 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