{"id":8810,"date":"2023-12-27T07:00:00","date_gmt":"2023-12-27T07:00:00","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=8810"},"modified":"2025-10-14T04:53:53","modified_gmt":"2025-10-14T04:53:53","slug":"resumen-del-ano","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2023\/12\/27\/year-in-review\/","title":{"rendered":"2023 con RAWF: Resumen del a\u00f1o"},"content":{"rendered":"<p>2023 ha sido un a\u00f1o extraordinario para la Fundaci\u00f3n Raymond A. Wood, repleto de progreso, impacto e hitos significativos. Al echar la vista atr\u00e1s, nos complace compartir los aspectos m\u00e1s destacados que han dado forma a nuestra trayectoria en los \u00e1mbitos de la educaci\u00f3n, la investigaci\u00f3n, el apoyo, el desarrollo y el crecimiento.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Crecimiento y desarrollo<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Segundo a\u00f1o con la Iniciativa Chan Zuckerberg<\/strong>: Hemos seguido creciendo como parte de la red Rare as One de la Iniciativa Chan Zuckerberg, en el segundo a\u00f1o de este impactante viaje. El apoyo de esta subvenci\u00f3n nos ha ayudado a ampliar nuestro alcance y abogar por los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios a mayor escala.<\/li>\n\n\n\n<li><strong>Celebrando a los supervivientes: <\/strong>Hemos celebrado nuestra 5\u00aa edici\u00f3n anual de Art of Surviving en reconocimiento al Mes de la concienciaci\u00f3n sobre los tumores cerebrales. Este a\u00f1o, dimos vida a nuestra exposici\u00f3n de arte virtual en nuestra primera recepci\u00f3n presencial y galer\u00eda en Falls Church, Virginia, donde mostramos el trabajo art\u00edstico de nuestra comunidad de tumores cerebrales.<\/li>\n\n\n\n<li><strong>Recaudaci\u00f3n de fondos e ilusi\u00f3n<\/strong>: Nuestro Big Fish Classic Ford Bronco Raffle 2023 no s\u00f3lo gener\u00f3 emoci\u00f3n y expectaci\u00f3n por el gran ganador, sino que tambi\u00e9n recaud\u00f3 fondos cruciales para nuestra fundaci\u00f3n, lo que nos permite continuar nuestro trabajo vital en apoyo directo de los supervivientes y cuidadores. <\/li>\n\n\n\n<li><strong>Ampliaci\u00f3n del equipo: <\/strong>Dimos la bienvenida a Meghan Wood, Responsable de Grandes Donaciones, a nuestro equipo, reforzando nuestra capacidad de crecimiento e impacto.<\/li>\n\n\n\n<li><strong>Nuevos miembros del Consejo<\/strong>: Estamos encantados de dar la bienvenida a tres nuevos miembros de la Junta Directiva: Josh Blumenthal, Joan Saperstein, MD, y Ethan Schilling, PhD. Sus diversos conocimientos han enriquecido nuestra direcci\u00f3n.<\/li>\n\n\n\n<li><strong>Ascendiendo<\/strong>: Jamie Ping asumi\u00f3 un papel m\u00e1s amplio dentro de RAWF, de Coordinadora de Divulgaci\u00f3n a Directora de Comunicaci\u00f3n y Divulgaci\u00f3n.<\/li>\n\n\n\n<li><strong>Seguir adelante<\/strong>: Shawn Wood y Caroline Coakley, miembros fundadores de la Junta Directiva, han pasado a desempe\u00f1ar el cargo de miembros em\u00e9ritos. Les estamos profundamente agradecidos por sus servicios.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Educaci\u00f3n y divulgaci\u00f3n<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Compartir conocimientos a escala mundial<\/strong>: Nuestra Amy Wood tuvo el honor de participar en la Cumbre Mundial de la Alianza Internacional de Tumores Cerebrales celebrada en Viena (Austria). Su presentaci\u00f3n sobre \"Enfoques novedosos para apoyar a los pacientes j\u00f3venes con tumores cerebrales hipotal\u00e1mico-hipofisarios\" mostr\u00f3 la experiencia de sobrevivir a un craneofaringioma y nuestra dedicaci\u00f3n a difundir la concienciaci\u00f3n en un escenario global.<\/li>\n\n\n\n<li><strong>Volver a conectar<\/strong> <strong>En persona:<\/strong> Despu\u00e9s de un par\u00e9ntesis, organizamos nuestra primera Conferencia Familiar sobre Tumores Cerebrales Hipofisarios en persona desde 2019 en el Hospital Infantil de Filadelfia. Los temas abarcaron salud integral, problemas endocrinos, desaf\u00edos sociales y del sue\u00f1o, as\u00ed como oportunidades para establecer contactos y crear comunidad.<\/li>\n\n\n\n<li><strong>Concienciaci\u00f3n creciente: <\/strong>Amy Wood particip\u00f3 en un panel, compartiendo la importancia de los datos en la investigaci\u00f3n de enfermedades raras, en la Semana Komodo en Las Vegas el pasado marzo y present\u00f3 la perspectiva del paciente y cuidador de obesidad hipotal\u00e1mica en Boston para el evento de I+D de Rhythm Pharmaceuticals a principios de este mes.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Investigaci\u00f3n<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Financiaci\u00f3n de la innovaci\u00f3n m\u00e9dica: <\/strong>RAWF continu\u00f3 invirtiendo y asesorando en el desarrollo de un medidor de sodio de uso dom\u00e9stico para la gesti\u00f3n de la atenci\u00f3n en la diabetes ins\u00edpida y otras enfermedades que requieren pruebas de sodio. \u00a1Este proyecto ser\u00e1 uno de los principales focos de atenci\u00f3n en 2024!<\/li>\n\n\n\n<li><strong>Iniciativa de registro de pacientes<\/strong>: En 2023, nos embarcamos en el desarrollo del Registro de Pacientes con Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios, un hito importante guiado por Nathalie Kayadjanian PhD y nuestro Consejo Asesor del Registro de Pacientes. Este registro promete ser un valioso recurso para avanzar en la investigaci\u00f3n y la comprensi\u00f3n de estos tumores poco frecuentes.<\/li>\n\n\n\n<li><strong>Reforzar la experiencia investigadora: <\/strong>Nuestro Consejo Asesor Cient\u00edfico celebr\u00f3 dos reuniones y dio la bienvenida al Dr. Soma Sengupta como nuevo miembro, lo que refuerza a\u00fan m\u00e1s el compromiso de RAWF con la excelencia investigadora.<\/li>\n\n\n\n<li><strong>Contribuir al conocimiento m\u00e9dico<\/strong>: Hemos hecho una contribuci\u00f3n significativa a la comunidad m\u00e9dica al publicar \"Caregiver Burden and Its Relationship to Health-Related Quality of Life in Craniopharyngioma Survivors\" en el Journal of Clinical Endocrinology and Metabolism, arrojando luz sobre un aspecto importante de nuestra misi\u00f3n.<\/li>\n\n\n\n<li><strong>Esfuerzos de colaboraci\u00f3n<\/strong>: Seguimos prestando apoyo financiero y formando parte del Consejo Ejecutivo de la Children's Brain Tumor Network. Esta colaboraci\u00f3n apoya un biobanco de tejido tumoral para acelerar la investigaci\u00f3n del craneofaringioma. Adem\u00e1s, participamos en el Grupo de Trabajo sobre Craneofaringioma del PNOC.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Ayuda<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Apoyo comunitario: <\/strong>Los grupos de apoyo mensuales para cuidadores y supervivientes siguieron siendo una parte crucial de nuestros esfuerzos educativos. Estos grupos proporcionaron un espacio para compartir experiencias, ofrecer apoyo y construir una comunidad fuerte y solidaria. Adem\u00e1s, ofrecimos oportunidades de tutor\u00eda a las familias reci\u00e9n diagnosticadas, gui\u00e1ndolas en su viaje con compasi\u00f3n y experiencia.<\/li>\n\n\n\n<li><strong>Experiencia en l\u00ednea mejorada<\/strong>: En 2023 estrenamos un nuevo sitio web, dise\u00f1ado para ser un centro de recursos integral para pacientes y familiares. Ahora ofrece un acceso m\u00e1s f\u00e1cil a la informaci\u00f3n sobre investigaci\u00f3n, ensayos cl\u00ednicos, servicios de apoyo y b\u00fasqueda de m\u00e9dicos.<\/li>\n\n\n\n<li><strong>Gesti\u00f3n de los cuidados: <\/strong>Seguimos proporcionando analizadores de sangre port\u00e1tiles a familias con pacientes pedi\u00e1tricos que padecen una diabetes ins\u00edpida provocada por un tumor cerebral. Este fue el proyecto que lanz\u00f3 RAWF y sigue siendo una parte importante de nuestro trabajo. Actualmente tenemos en circulaci\u00f3n 30 analizadores de sangre port\u00e1tiles.<\/li>\n<\/ul>\n\n\n\n<p>Al reflexionar sobre estos hitos, expresamos nuestra m\u00e1s sincera gratitud a nuestra comunidad, equipo y socios por su apoyo incondicional. Juntos hemos logrado hitos incre\u00edbles en 2023 y estamos entusiasmados con el futuro.<\/p>\n\n\n\n<p>Gracias por unirse a nosotros en esta misi\u00f3n de defensa, educaci\u00f3n y apoyo a nuestra comunidad de tumores cerebrales raros. Esperamos otro a\u00f1o de progreso y de marcar la diferencia en las vidas de aquellos a los que servimos. <\/p>","protected":false},"excerpt":{"rendered":"<p>2023 ha sido un a\u00f1o extraordinario para la Fundaci\u00f3n Raymond A. Wood, lleno de ... <a title=\"2023 con RAWF: Resumen del a\u00f1o\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/es\/2023\/12\/27\/year-in-review\/\" aria-label=\"Leer m\u00e1s sobre 2023 con RAWF: Resumen del a\u00f1o\">Seguir leyendo<\/a><\/p>","protected":false},"author":6,"featured_media":8813,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[30],"tags":[],"class_list":["post-8810","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rawf-news","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>2023 with RAWF: A Year in Review - Raymond A. 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