{"id":10713,"date":"2024-12-18T16:40:53","date_gmt":"2024-12-18T16:40:53","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=10713"},"modified":"2024-12-18T16:45:08","modified_gmt":"2024-12-18T16:45:08","slug":"resumen-del-ano-2024-fomento-de-la-investigacion-y-el-apoyo-en-materia-de-promocion","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2024\/12\/18\/2024-year-in-review-advancing-advocacy-research-and-support\/","title":{"rendered":"Resumen del a\u00f1o 2024: Promoci\u00f3n, investigaci\u00f3n y apoyo"},"content":{"rendered":"<h2 class=\"wp-block-heading\"><strong>Reflexiones sobre un a\u00f1o de crecimiento, resistencia e impacto en la comunidad<\/strong><\/h2>\n\n\n\n<p>A punto de concluir 2024, la Fundaci\u00f3n Raymond A. Wood reflexiona sobre un a\u00f1o marcado por importantes logros en investigaci\u00f3n, defensa de los pacientes y apoyo a los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios. Estos hitos han sido posibles gracias a la dedicaci\u00f3n de nuestros partidarios, colaboradores y la resistente comunidad a la que servimos.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Lo m\u00e1s destacado de la investigaci\u00f3n<\/strong><\/h3>\n\n\n\n<p>Este a\u00f1o, la Fundaci\u00f3n ha consolidado su papel de l\u00edder en iniciativas de investigaci\u00f3n centradas en el paciente:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Lanzamiento del registro de pacientes<\/strong>: Estamos orgullosos de haber lanzado el Registro de Pacientes con Tumores Cerebrales Hipotal\u00e1mico-Hipofisarios. Esta herramienta vital pone en contacto a supervivientes y cuidadores con oportunidades para contribuir a una investigaci\u00f3n pionera, que permita comprender mejor el impacto de estos tumores y las enfermedades poco frecuentes que se derivan de ellos, como la obesidad hipotal\u00e1mica.<\/li>\n\n\n\n<li><strong>Composici\u00f3n del Consejo Ejecutivo<\/strong>: Continuamos como miembros del Consejo Ejecutivo de la Children's Brain Tumor Network (CBTN). La CBTN es un biobanco de tumores cerebrales en expansi\u00f3n que proporciona datos de muestras a los investigadores para acelerar la investigaci\u00f3n sobre tumores cerebrales. A trav\u00e9s de nuestra colaboraci\u00f3n con la CBTN, pretendemos conectar los datos de nuestro registro de pacientes con muestras de tejido de craneofaringioma.<\/li>\n\n\n\n<li><strong>Avances en el medidor de sodio<\/strong>: El desarrollo del medidor de sodio dom\u00e9stico sigui\u00f3 siendo una piedra angular de nuestro trabajo. En 2024, nos centramos en buscar oportunidades de financiaci\u00f3n para avanzar en el desarrollo de esta herramienta transformadora, que tiene el potencial de revolucionar la atenci\u00f3n a las personas con desequilibrios de sodio.<\/li>\n\n\n\n<li><strong>Colaboraciones en investigaci\u00f3n<\/strong>: A trav\u00e9s de asociaciones dirigidas por nuestra directora cient\u00edfica, la Dra. Nathalie Kayadjanian, hemos impulsado avances en \u00e1mbitos como la obesidad hipotal\u00e1mica, las mejoras de la calidad de vida y la integraci\u00f3n de los resultados comunicados por los pacientes en la planificaci\u00f3n del tratamiento.<\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Defensa y apoyo<\/strong><\/h3>\n\n\n\n<p>Seguimos reforzando nuestros esfuerzos de defensa y apoyo a los pacientes, garantizando que los supervivientes y sus familias tengan acceso a los recursos que necesitan:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Iniciativas educativas<\/strong>: Organizamos seminarios web y a\u00f1adimos contenidos a nuestro canal de YouTube para informar a pacientes y familiares sobre tumores, tratamientos y gesti\u00f3n de los cuidados.<\/li>\n\n\n\n<li><strong>Tutor\u00eda de pacientes reci\u00e9n diagnosticados<\/strong>: Apoyamos a las familias que inician su andadura poni\u00e9ndolas en contacto con mentores que respondan a sus preguntas y les orienten.<\/li>\n\n\n\n<li><strong>Crecimiento comunitario<\/strong>: El lanzamiento del registro de pacientes y los esfuerzos de participaci\u00f3n amplificaron las voces de los pacientes en la investigaci\u00f3n y crearon una comunidad mundial m\u00e1s conectada.<\/li>\n\n\n\n<li><strong>Concienciaci\u00f3n<\/strong>: Durante el Mes de la Concienciaci\u00f3n sobre los Tumores Cerebrales, organizamos la 6\u00aa edici\u00f3n anual de Art of Surviving (El Arte de Sobrevivir), para concienciar sobre los tumores cerebrales.<\/li>\n\n\n\n<li><strong>Grupos de apoyo<\/strong>: Los grupos mensuales de apoyo a cuidadores y supervivientes proporcionaron espacios seguros para compartir experiencias y conectar con otras personas.<\/li>\n\n\n\n<li><strong>Analizadores de sangre port\u00e1tiles para el tratamiento de la diabetes ins\u00edpida<\/strong>: Este a\u00f1o hemos distribuido cinco analizadores de sangre port\u00e1tiles a pacientes pedi\u00e1tricos, lo que ha permitido a las familias gestionar mejor la diabetes ins\u00edpida y mejorar los cuidados cotidianos.<\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Recaudaci\u00f3n de fondos y desarrollo<\/strong><\/h3>\n\n\n\n<p>En 2024, la Fundaci\u00f3n Raymond A. Wood experiment\u00f3 un a\u00f1o de recaudaci\u00f3n de fondos transformador, impulsado por la generosidad y el entusiasmo de nuestros partidarios:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Socio ben\u00e9fico de la Media Marat\u00f3n de Nueva York<\/strong>: Estuvimos encantados de convertirnos en socios ben\u00e9ficos de la prestigiosa Media Marat\u00f3n de Nueva York. Nuestro entregado equipo de corredores no solo recaud\u00f3 fondos, sino que tambi\u00e9n atrajo la atenci\u00f3n nacional sobre las necesidades de los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios.<\/li>\n\n\n\n<li><strong>Campa\u00f1a de donaciones paralelas del Mes de Concienciaci\u00f3n sobre los Tumores Cerebrales<\/strong>: En mayo lanzamos con \u00e9xito una campa\u00f1a de donativos de contrapartida. Gracias a la generosidad de nuestra junta directiva y de nuestros socios, duplicamos el impacto de las contribuciones, lo que permiti\u00f3 destinar fondos esenciales a programas de investigaci\u00f3n y defensa del paciente.<\/li>\n\n\n\n<li><strong>Gala DC Dancing Stars<\/strong>: Como beneficiarios recurrentes de la gala DC Dancing Stars, recaudamos importantes fondos para continuar iniciativas como el proyecto de medidores de sodio a domicilio. El acto puso de manifiesto el incre\u00edble poder de la filantrop\u00eda impulsada por la comunidad.<\/li>\n\n\n\n<li><strong>Martes de donaciones: Campa\u00f1a \"La costa da m\u00e1s<\/strong>: Terminamos el a\u00f1o con la campa\u00f1a Shore Gives More. Esta iniciativa basada en la comunidad atrajo a simpatizantes locales y contribuy\u00f3 a nuestros objetivos de recaudaci\u00f3n de fondos de fin de a\u00f1o, garantizando la sostenibilidad de nuestros programas y servicios.<\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Navegar la transici\u00f3n m\u00e1s all\u00e1 de la subvenci\u00f3n CZI<\/strong><\/h3>\n\n\n\n<p>En 2024, marcamos la conclusi\u00f3n de la subvenci\u00f3n CZI Rare As One Network, que proporcion\u00f3 un apoyo transformador durante los \u00faltimos a\u00f1os. Aunque la subvenci\u00f3n ha finalizado, nuestro compromiso con la colaboraci\u00f3n dentro de la Red Rare As One sigue siendo firme. Como miembros activos de esta inspiradora comunidad, seguimos trabajando junto a colegas de enfermedades raras, compartiendo experiencias y estrategias para impulsar el progreso. Las relaciones y los conocimientos adquiridos a trav\u00e9s de esta red seguir\u00e1n dando forma y fortaleciendo nuestra misi\u00f3n.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>De cara al futuro<\/strong><\/h3>\n\n\n\n<p>2024 ha sido un a\u00f1o de crecimiento, aprendizaje e impacto. De cara a 2025, nos animan las oportunidades de ampliar nuestro alcance, desarrollar nuevos recursos y continuar nuestra misi\u00f3n de mejorar la calidad de vida de los supervivientes y sus familias. Seguimos comprometidos con la colaboraci\u00f3n \u00e9tica con socios corporativos y de investigaci\u00f3n, garantizando que los intereses de la comunidad sigan estando en el centro de todo lo que hacemos.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Agradecimiento a nuestros colaboradores<\/strong><\/h3>\n\n\n\n<p>Gracias a todos los que han contribuido a nuestra misi\u00f3n este a\u00f1o. Su generosidad, tiempo y dedicaci\u00f3n hacen posible llevar a cabo investigaciones pioneras, proporcionar recursos esenciales y abogar por un cambio significativo.<\/p>\n\n\n\n<p>Juntos estamos creando un futuro mejor para los supervivientes. \u00a1A aprovechar este impulso en 2025!<\/p>\n\n\n\n<a class=\"gb-button gb-button-f3c4a469 gb-button-text\" href=\"https:\/\/www.rawoodfoundation.org\/es\/hacer-un-donativo\/\">Hacer un donativo<\/a>\n\n\n\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>Reflexiones sobre un a\u00f1o de crecimiento, resistencia e impacto en la comunidad A punto de concluir 2024, ... <a title=\"Resumen del a\u00f1o 2024: Promoci\u00f3n, investigaci\u00f3n y apoyo\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/es\/2024\/12\/18\/2024-year-in-review-advancing-advocacy-research-and-support\/\" aria-label=\"Leer m\u00e1s sobre Resumen del a\u00f1o 2024: Promoci\u00f3n, investigaci\u00f3n y apoyo\">Seguir leyendo<\/a><\/p>","protected":false},"author":4,"featured_media":10719,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-10713","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","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>2024 Year in Review: Advancing Advocacy, Research, and Support - Raymond A. 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