{"id":17985,"date":"2025-12-09T17:06:24","date_gmt":"2025-12-09T17:06:24","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=17985"},"modified":"2025-12-09T17:06:25","modified_gmt":"2025-12-09T17:06:25","slug":"balance-del-ano-2025-impulsar-la-investigacion-potenciar-a-las-familias-y-reforzar-la-comunidad","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2025\/12\/09\/2025-year-in-review-advancing-research-empowering-families-and-strengthening-community\/","title":{"rendered":"Resumen del a\u00f1o 2025: Impulsar la investigaci\u00f3n, capacitar a las familias y reforzar la comunidad\u00a0"},"content":{"rendered":"<p><\/p>\n\n\n<div class=\"gb-container gb-container-14a4e5f3\">\n\n<p>Al cierre de 2025, la Fundaci\u00f3n Raymond A. Wood (RAWF) refleja un a\u00f1o definido por el progreso, la colaboraci\u00f3n y el prop\u00f3sito. Desde importantes avances en tecnolog\u00eda m\u00e9dica hasta un mayor apoyo emocional para supervivientes y cuidadores, cada hito fue impulsado por nuestro compromiso de mejorar la calidad de vida de las personas afectadas por tumores cerebrales hipotal\u00e1mico-hipofisarios y afecciones relacionadas. Gracias a nuestra comunidad, voluntarios, donantes y socios, 2025 impuls\u00f3 nuestra misi\u00f3n de forma transformadora.&nbsp;<\/p>\n\n<\/div>\n\n\n<h2 class=\"wp-block-heading\"><strong>Innovaci\u00f3n en la atenci\u00f3n al paciente<\/strong>&nbsp;<\/h2>\n\n\n\n<p><\/p>\n\n\n\n<p><strong>Avances en el desarrollo de medidores de sodio de uso dom\u00e9stico<\/strong>&nbsp;<\/p>\n\n\n\n<p>Este a\u00f1o se ha dado un gran paso adelante en una de las iniciativas m\u00e1s ambiciosas de RAWF: el desarrollo de un medidor de sodio en sangre de uso dom\u00e9stico. Dise\u00f1ado para ayudar a las familias que se enfrentan a una inestabilidad cr\u00f3nica del sodio debido a tumores cerebrales hipotal\u00e1mico-hipofisarios, este dispositivo tiene el potencial de reducir las crisis m\u00e9dicas, evitar las visitas a urgencias y permitir un control m\u00e1s seguro en casa.&nbsp;<\/p>\n\n\n\n<p>Aunque se inspira en las necesidades de la comunidad de tumores craneofaringiomas e hipot\u00e1lamo-hipofisarios, esta tecnolog\u00eda podr\u00eda afectar en \u00faltima instancia a un grupo mucho m\u00e1s amplio, incluidos los pacientes con diabetes ins\u00edpida, insuficiencia cardiaca, enfermedad renal y otras afecciones en las que la hidrataci\u00f3n y el equilibrio de sodio son esenciales.&nbsp;<\/p>\n\n\n\n<p>Mientras nos preparamos para la siguiente fase, que incluye la planificaci\u00f3n reglamentaria y la ampliaci\u00f3n de las pruebas con usuarios, seguimos empe\u00f1ados en garantizar que el producto final no s\u00f3lo sea cient\u00edficamente s\u00f3lido, sino tambi\u00e9n accesible, asequible y responda a las necesidades de nuestra comunidad.&nbsp;<\/p>\n\n\n\n<p><strong>Actualizaci\u00f3n de nuestro innovador registro de pacientes<\/strong>&nbsp;<\/p>\n\n\n\n<p>En 2025, RAWF celebr\u00f3 un a\u00f1o desde el lanzamiento de una importante iniciativa de investigaci\u00f3n: un registro integral de pacientes que recoge los retos del mundo real, las lagunas en el tratamiento y las prioridades de los supervivientes. Este registro ya est\u00e1 informando sobre futuras direcciones de investigaci\u00f3n e identificando necesidades no cubiertas en toda la comunidad mundial de supervivientes con 392 participantes en 23 pa\u00edses de todo el mundo. Durante el a\u00f1o pasado, implementamos 3 nuevos estudios de investigaci\u00f3n en el registro para comprender mejor la hiperfagia, la fatiga (en colaboraci\u00f3n con Rhythm Pharmaceuticals) y las perspectivas de los supervivientes y cuidadores sobre los desaf\u00edos de salud m\u00e1s impactantes y las prioridades para los tratamientos. La recopilaci\u00f3n de datos reales basados en pruebas directamente de la comunidad ayudar\u00e1 a la comunidad investigadora a comprender mejor el viaje del superviviente y a dar forma a la agenda de investigaci\u00f3n para desarrollar tratamientos significativos que mejoren la vida de los supervivientes. &nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Defensa y apoyo al paciente<\/h2>\n\n\n\n<p><\/p>\n\n\n\n<p><strong>Ampliaci\u00f3n del acceso a los analizadores de sangre port\u00e1tiles<\/strong>&nbsp;<\/p>\n\n\n\n<p>Este a\u00f1o, RAWF ha distribuido seis analizadores de sangre port\u00e1tiles a familias de todo Estados Unidos. Estos dispositivos ya est\u00e1n transformando la atenci\u00f3n domiciliaria al proporcionar a los cuidadores lecturas r\u00e1pidas de sodio, reduciendo las visitas a urgencias, previniendo hospitalizaciones evitables y ayudando a las familias a tomar decisiones seguras en tiempo real.&nbsp;<\/p>\n\n\n\n<p>Para reforzar este programa, dimos la bienvenida a la enfermera voluntaria Michele Blacksberg, que ahora ofrece apoyo personalizado, resoluci\u00f3n de problemas y orientaci\u00f3n a las familias que utilizan activamente los dispositivos. Su experiencia ha hecho que estas herramientas sean a\u00fan m\u00e1s accesibles y ha mejorado la experiencia general de los cuidadores que buscan estabilidad en situaciones m\u00e9dicas impredecibles.&nbsp;<\/p>\n\n\n\n<p><strong>Crear comunidad mediante grupos de apoyo<\/strong>&nbsp;<\/p>\n\n\n\n<p>En 2025, RAWF ampli\u00f3 sus programas de apoyo para reflejar las necesidades diversas y cambiantes de los supervivientes, los cuidadores y las familias. A trav\u00e9s de sesiones virtuales y conexiones personalizadas, seguimos cultivando espacios seguros basados en la empat\u00eda, la educaci\u00f3n y la experiencia vivida.&nbsp;<\/p>\n\n\n\n<p>Este a\u00f1o hemos sido anfitriones:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>12 Grupos de apoyo a cuidadores<\/strong>&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>12 Grupos de apoyo a supervivientes<\/strong>&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>6 Grupos de apoyo a adolescentes<\/strong>adaptada espec\u00edficamente a los adolescentes supervivientes&nbsp;<\/li>\n<\/ul>\n\n\n\n<p>Reconociendo la profunda necesidad de atenci\u00f3n espec\u00edfica para el duelo, RAWF tambi\u00e9n introdujo sesiones de duelo individuales facilitadas por la especialista en apoyo al duelo Holly Gainsboro, que trabaja estrechamente con personas afectadas por p\u00e9rdidas relacionadas con tumores cerebrales. Estos recursos garantizan que nadie en nuestra comunidad recorra su camino solo.&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Recaudaci\u00f3n de fondos e impacto comunitario<\/h2>\n\n\n\n<p><\/p>\n\n\n\n<p><strong>Gala DC's Dancing Stars: Un a\u00f1o r\u00e9cord<\/strong>&nbsp;<\/p>\n\n\n\n<p>RAWF tuvo el honor de volver a ser uno de los 2025 beneficiarios de la gala DC's Dancing Stars.  Nuestros bailarines Mike Brown y Adriana Fonseca ten\u00edan una conexi\u00f3n personal con nuestra comunidad; la sobrina nieta de Mike, Maddie, se enfrent\u00f3 valientemente a un craneofaringioma con s\u00f3lo 3 a\u00f1os, y Adriana ayuda a los pacientes como neuroonc\u00f3loga pedi\u00e1trica en el Children's National Hospital. Ofrecieron una actuaci\u00f3n apasionada e inolvidable, ganaron el Trofeo del Baile de los Espejos y recaudaron la impresionante cantidad de $116.000 para apoyar los programas y las innovaciones de RAWF.\u00a0<\/p>\n\n\n\n<p><strong>Media Marat\u00f3n de Nueva York: Correr con un prop\u00f3sito<\/strong>&nbsp;<\/p>\n\n\n\n<p>En marzo, un equipo de dedicados corredores -entre ellos Ross Martin y Cecilia Scimia, de Rhythm Pharmaceuticals, y David Johnson, cuidador de un superviviente de craneofaringioma- participaron en la Media Marat\u00f3n de Nueva York en nombre de RAWF. Juntos recaudaron casi $15.000, ayudando a aumentar la concienciaci\u00f3n y a dar visibilidad nacional a nuestra misi\u00f3n.&nbsp;<\/p>\n\n\n\n<p><strong>El arte de sobrevivir: Creatividad que sana<\/strong>&nbsp;<\/p>\n\n\n\n<p>Nuestro <em>El arte de sobrevivir<\/em> en mayo, con motivo del Mes de Concienciaci\u00f3n sobre los Tumores Cerebrales, sigue poniendo de relieve el talento y la capacidad de recuperaci\u00f3n de los supervivientes de todo el mundo.&nbsp;<\/p>\n\n\n\n<p>El acto de este a\u00f1o acogi\u00f3:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>53 artistas<\/strong>&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>74 comunicaciones<\/strong>&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>22.839 votos de 281 simpatizantes<\/strong>&nbsp;<\/li>\n<\/ul>\n\n\n\n<p>Con diversas obras de arte que representan la curaci\u00f3n, la recuperaci\u00f3n y la experiencia vivida, la exposici\u00f3n 2025 recaud\u00f3 $15.272 para apoyar los programas de supervivientes y los esfuerzos de defensa. Un panel de jueces que regres\u00f3 ayud\u00f3 a celebrar la creatividad en m\u00faltiples categor\u00edas, elevando las voces y perspectivas de la comunidad de supervivientes.&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">De cara a 2026<\/h2>\n\n\n\n<p><\/p>\n\n\n\n<p>Este a\u00f1o se ha demostrado lo que es posible cuando pacientes, familiares, m\u00e9dicos y simpatizantes trabajan juntos por la innovaci\u00f3n y la atenci\u00f3n compasiva. En 2026, RAWF se compromete a:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Avanzar en el desarrollo del medidor de sodio dom\u00e9stico&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Ampliar la investigaci\u00f3n mediante el registro de pacientes&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Crecen los programas de apoyo a cuidadores, adolescentes y personas en duelo&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Reforzar la colaboraci\u00f3n con m\u00e9dicos, investigadores y grupos de defensa de los derechos humanos&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Mayor concienciaci\u00f3n sobre las necesidades de los supervivientes de tumores cerebrales hipofisarios en todo el mundo&nbsp;<\/li>\n<\/ul>\n\n\n\n<p>RAWF sigue impulsada por la visi\u00f3n de un mundo en el que los supervivientes y las familias tengan las herramientas, los conocimientos y la comunidad que necesitan para prosperar, no s\u00f3lo para sobrevivir. Gracias por hacer de 2025 un a\u00f1o de avances significativos. Juntos, estamos construyendo un futuro de mejores cuidados, mayor defensa y esperanza.&nbsp;<\/p>\n\n\n\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>Al cierre de 2025, la Fundaci\u00f3n Raymond A. Wood (RAWF) refleja un a\u00f1o definido ... <a title=\"Resumen del a\u00f1o 2025: Impulsar la investigaci\u00f3n, capacitar a las familias y reforzar la comunidad\u00a0\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/es\/2025\/12\/09\/2025-year-in-review-advancing-research-empowering-families-and-strengthening-community\/\" aria-label=\"Leer m\u00e1s sobre Resumen del a\u00f1o 2025: Fomento de la investigaci\u00f3n, capacitaci\u00f3n de las familias y fortalecimiento de la comunidad\u00a0\">Seguir leyendo<\/a><\/p>","protected":false},"author":8,"featured_media":17989,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[30],"tags":[],"class_list":["post-17985","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>2025 Year in Review: Advancing Research, Empowering Families, and Strengthening Community\u00a0 - Raymond A. Wood Foundation<\/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:\/\/www.rawoodfoundation.org\/es\/2025\/12\/09\/balance-del-ano-2025-impulsar-la-investigacion-potenciar-a-las-familias-y-reforzar-la-comunidad\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"2025 Year in Review: Advancing Research, Empowering Families, and Strengthening Community\u00a0 - Raymond A. Wood Foundation\" \/>\n<meta property=\"og:description\" content=\"As we close out 2025, the Raymond A. Wood Foundation (RAWF) reflects a year defined ... 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