{"id":17489,"date":"2024-06-12T22:56:11","date_gmt":"2024-06-12T22:56:11","guid":{"rendered":"https:\/\/lpfch.org\/?p=17489"},"modified":"2024-08-27T20:35:25","modified_gmt":"2024-08-27T20:35:25","slug":"neuroimmune-foundation-fuels-pans-research-at-stanford-and-beyond","status":"publish","type":"post","link":"http:\/\/lpfch.org\/es\/impact-stories\/neuroimmune-foundation-fuels-pans-research-at-stanford-and-beyond\/","title":{"rendered":"La Fundaci\u00f3n Neuroinmune impulsa la investigaci\u00f3n PANS en Stanford y otros lugares"},"content":{"rendered":"<p><span data-contrast=\"auto\">Para los ni\u00f1os con PANS (S\u00edndrome Neuropsiqui\u00e1trico de Inicio Agudo Pedi\u00e1trico), la vida puede cambiar de la noche a la ma\u00f1ana. El PANS, un trastorno de salud conductual inmunitario, a menudo se caracteriza por la aparici\u00f3n repentina de s\u00edntomas neuropsiqui\u00e1tricos debilitantes, un cambio dr\u00e1stico y aterrador para los pacientes y sus familias. Sin embargo, si bien se necesita atenci\u00f3n urgente, abundan las barreras. Por un lado, la enfermedad puede ser dif\u00edcil de diagnosticar. Por otro lado, las brechas educativas son comunes, ya que los m\u00e9dicos cl\u00ednicos se quedan atr\u00e1s de los avances en la investigaci\u00f3n del PANS, que ha florecido en la \u00faltima d\u00e9cada. Como resultado, las familias a menudo se enfrentan al escepticismo y a desaf\u00edos significativos al buscar atenci\u00f3n informada. Afortunadamente, el panorama est\u00e1 cambiando gracias a los esfuerzos apasionados de m\u00e9dicos cl\u00ednicos, investigadores y organizaciones como <\/span><a href=\"https:\/\/neuroimmune.org\/\"><span data-contrast=\"none\">Fundaci\u00f3n Neuroinmune<\/span><\/a><span data-contrast=\"auto\">.<\/span><\/p>\n<p><span data-contrast=\"auto\">Fundada en 2018, la Fundaci\u00f3n Neuroinmune, una organizaci\u00f3n sin fines de lucro, ya ha ayudado a capacitar a miles de profesionales cl\u00ednicos y ha construido una red geogr\u00e1ficamente extensa pero unida de familias de pacientes. Tambi\u00e9n ha proporcionado fondos significativos para impulsar la investigaci\u00f3n sobre PANS, y la Cl\u00ednica Stanford de Salud Inmune y Conductual (IBH) y el Programa PANS est\u00e1n muy agradecidos. La Dra. Jennifer Frankovich, quien dirige la cl\u00ednica y el programa de investigaci\u00f3n, afirma: \u00abLa Fundaci\u00f3n Neuroinmune no solo ha contribuido al avance de la investigaci\u00f3n, sino que, a\u00fan m\u00e1s impresionante, ha hecho posible que miles de familias accedan a la atenci\u00f3n m\u00e9dica gracias a sus inmensos esfuerzos de educaci\u00f3n cl\u00ednica\u00bb.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">La Cl\u00ednica Stanford IBH es la primera cl\u00ednica multidisciplinaria de PANS del mundo y ofrece un modelo para la atenci\u00f3n cl\u00ednica de esta compleja afecci\u00f3n m\u00e9dico-psiqui\u00e1trica. El apoyo filantr\u00f3pico ha sido fundamental para que la Cl\u00ednica Stanford IBH y el Programa PANS lideren los avances en la atenci\u00f3n, especialmente cuando las primeras investigaciones sobre PANS tuvieron dificultades para consolidarse en el sistema m\u00e9dico.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">La financiaci\u00f3n de la Fundaci\u00f3n Neuroinmune dio lugar a dos importantes iniciativas de investigaci\u00f3n dirigidas por el Dr. Frankovich. El primer proyecto profundizar\u00e1 en el conocimiento de los medicamentos de uso com\u00fan para el PANS mediante la recopilaci\u00f3n de datos sobre la eficacia de los f\u00e1rmacos antirreum\u00e1ticos modificadores de la enfermedad (FAME) en m\u00e1s de 500 pacientes con PANS y afecciones relacionadas. Adem\u00e1s, la Fundaci\u00f3n Neuroinmune apoya un proyecto sobre el microbioma dirigido por el equipo del Dr. Frankovich en colaboraci\u00f3n con investigadores de la Universidad de California en Santa Cruz. El objetivo de este proyecto es recolectar placa oral de pacientes con PANS y afecciones relacionadas (tanto durante los episodios de brote como durante la recuperaci\u00f3n) y compararla con muestras de ni\u00f1os sanos. La placa, que puede servir como registro geol\u00f3gico de infecciones recientes, permitir\u00e1 a estos investigadores identificar especies microbianas espec\u00edficas que intervienen en el PANS y afecciones relacionadas.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Anna Conkey, directora ejecutiva y fundadora de Neuroimmune Foundation, dice que la organizaci\u00f3n decidi\u00f3 apoyar el trabajo de la Dra. Frankovich en Stanford no solo porque &quot;ella es <\/span><span data-contrast=\"none\">ampliamente considerado como la m\u00e1xima autoridad\u201d en el cuidado e investigaci\u00f3n de PANS, pero debido a la generosidad del Dr. Frankovich al compartir experiencia y conocimiento para hacer avanzar el campo.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Adem\u00e1s de impulsar los proyectos sobre f\u00e1rmacos antirreum\u00e1ticos modificadores de la enfermedad (FAME) y microbioma, la Fundaci\u00f3n Neuroinmune tambi\u00e9n contribuy\u00f3 a la obtenci\u00f3n de fondos del Estado de Carolina del Norte para desarrollar un programa y materiales de capacitaci\u00f3n cl\u00ednica, con el objetivo final de ampliar la formaci\u00f3n m\u00e9dica y las capacidades de tratamiento en todo el pa\u00eds. Entre otros beneficios, esta subvenci\u00f3n financiar\u00e1 a los primeros becarios cl\u00ednicos de PANS en Stanford, y probablemente en todo el mundo, lo que contribuir\u00e1 a consolidar PANS como un campo en el que m\u00e9dicos talentosos y curiosos pueden aprender a brindar atenci\u00f3n basada en la evidencia a pacientes con PANS y afecciones relacionadas. Los becarios aprender\u00e1n mediante la observaci\u00f3n directa en la Cl\u00ednica IBH de Stanford, as\u00ed como a trav\u00e9s de conferencias, seminarios y sesiones de revisi\u00f3n de casos impartidas por expertos en la materia.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Conkey afirma: \u00abUno de los objetivos principales de la Fundaci\u00f3n Neuroinmune es impulsar el ritmo al que los m\u00e9dicos ingresan al campo, preparados para brindar atenci\u00f3n reflexiva y con visi\u00f3n de futuro a los pacientes con afecciones neuroinmunes\u00bb. Con este fin, <\/span><span data-contrast=\"auto\">El Dr. Frankovich afirma que la Fundaci\u00f3n Neuroinmune ha creado un programa que est\u00e1 marcando la diferencia al abordar la enorme necesidad insatisfecha de informaci\u00f3n y atenci\u00f3n para el PANS, difundiendo conocimientos y facilitando nuevas colaboraciones con m\u00e9dicos cl\u00ednicos e investigadores del campo. El Dr. Frankovich afirma: \u00abEstamos enormemente agradecidos por el apoyo de la Fundaci\u00f3n Neuroinmune, que brinda esperanza y respuestas a familias de todo el pa\u00eds y del mundo\u00bb.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>Para los ni\u00f1os con PANS (S\u00edndrome Neuropsiqui\u00e1trico Agudo Pedi\u00e1trico), la vida puede cambiar de la noche a la ma\u00f1ana. El PANS, un trastorno de salud mental relacionado con el sistema inmunitario, se caracteriza a menudo por un inicio repentino\u2026<\/p>","protected":false},"author":16,"featured_media":17490,"comment_status":"open","ping_status":"open","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":[164,1],"class_list":["post-17489","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-research","category-uncategorized"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.2 (Yoast SEO v27.2) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Neuroimmune Foundation Fuels PANS Research at Stanford and Beyond - 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=\"http:\/\/lpfch.org\/es\/impact-stories\/neuroimmune-foundation-fuels-pans-research-at-stanford-and-beyond\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Neuroimmune Foundation Fuels PANS Research at Stanford and Beyond\" \/>\n<meta property=\"og:description\" content=\"For children with PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), life can change overnight. 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