{"id":59,"date":"2020-05-06T15:22:35","date_gmt":"2020-05-06T15:22:35","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2020\/05\/06\/2020-5-6-the-raymond-a-wood-foundation-announces-new-mission-statement\/"},"modified":"2023-08-22T15:27:04","modified_gmt":"2023-08-22T15:27:04","slug":"2020-5-6-la-fundacion-raymond-a-wood-anuncia-su-nueva-mision","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2020\/05\/06\/2020-5-6-the-raymond-a-wood-foundation-announces-new-mission-statement\/","title":{"rendered":"La Fundaci\u00f3n Raymond A. Wood anuncia su nueva misi\u00f3n"},"content":{"rendered":"<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space:pre-wrap;\">Hoy, la Fundaci\u00f3n Raymond A. Wood (RAWF) anuncia una nueva misi\u00f3n t<strong>o Capacitar a los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios para mejorar su calidad de vida facilit\u00e1ndoles el acceso a la educaci\u00f3n, la tecnolog\u00eda y los tratamientos en evoluci\u00f3n.<\/strong> La misi\u00f3n ampl\u00eda el alcance de la fundaci\u00f3n para incluir a los supervivientes adultos y se centra en los tumores que ocupan el hipot\u00e1lamo y la hip\u00f3fisis. Los tumores en estas regiones cerebrales pueden afectar significativamente a la regulaci\u00f3n de una amplia gama de procesos fisiol\u00f3gicos y conductuales, como la funci\u00f3n endocrina, el metabolismo, el equilibrio h\u00eddrico, la memoria y el funcionamiento social, la visi\u00f3n, el crecimiento y la respuesta al estr\u00e9s.&nbsp;<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Fundada en 2017 por Shawn y Amy Wood en honor a su hijo, Raymond \"Alex\" Wood, al que diagnosticaron a los 4 a\u00f1os un craneofaringioma, un tumor raro que se desarrolla en el hipot\u00e1lamo y la hip\u00f3fisis, la misi\u00f3n original de RAWF era proporcionar apoyo a la calidad de vida de los supervivientes de tumores cerebrales pedi\u00e1tricos y sus cuidadores. El primer objetivo de la fundaci\u00f3n era proporcionar dispositivos m\u00e9dicos a los pacientes para controlar la diabetes ins\u00edpida, una enfermedad rara y potencialmente mortal que suele ser consecuencia de da\u00f1os en las \u00e1reas cerebrales responsables de la regulaci\u00f3n del equilibrio de l\u00edquidos en el organismo. Esto puede provocar niveles de sodio en sangre extremadamente altos o bajos y tener graves consecuencias m\u00e9dicas. En los \u00faltimos tres a\u00f1os, 17 pacientes pedi\u00e1tricos de todo el pa\u00eds han recibido estos dispositivos de forma gratuita, lo que ha ayudado a los cuidadores a controlar mejor esta afecci\u00f3n y, al mismo tiempo, ha compensado las visitas al laboratorio y a urgencias, as\u00ed como las hospitalizaciones.<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">A medida que la fundaci\u00f3n ha ido creciendo, se han hecho patentes las necesidades no cubiertas de los supervivientes de estos tipos de tumores cerebrales, ya que los cuidadores luchan por proporcionar una atenci\u00f3n adecuada y encontrar acceso a terapias o tratamientos que podr\u00edan mejorar la vida de sus seres queridos. Los tumores de esta categor\u00eda incluyen el craneofaringioma, el germinoma y los tumores de c\u00e9lulas germinales, el hamartoma hipotal\u00e1mico, el glioma de bajo grado, el adenoma de gran tama\u00f1o, el glioma de la v\u00eda \u00f3ptica, el astrocitoma piloc\u00edtico y el prolactinoma. Aunque los supervivientes pueden sufrir una combinaci\u00f3n de problemas fisiol\u00f3gicos y conductuales, la gran mayor\u00eda de los que tienen una repercusi\u00f3n hipotal\u00e1mica importante presentan mayores dificultades a largo plazo. El pron\u00f3stico depende del tama\u00f1o y la localizaci\u00f3n de los tumores, as\u00ed como del m\u00e9todo de tratamiento, ya sea resecci\u00f3n total del tumor, resecci\u00f3n parcial, radiaci\u00f3n o un h\u00edbrido de enfoques.<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">\"Estos tumores tienden a quedar fuera de muchas misiones en la comunidad de tumores cerebrales porque la mayor\u00eda son de naturaleza benigna y altamente supervivientes\", dijo Amy Wood, Directora Ejecutiva de RAWF. \"Esa es la buena noticia, pero la supervivencia tiene un alto precio por los efectos secundarios raros y desafiantes, el estr\u00e9s de los cuidadores y la carga de costes que conlleva la atenci\u00f3n continua\".<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">El otro gran cambio de direcci\u00f3n es que RAWF tambi\u00e9n se est\u00e1 ampliando para incluir a los supervivientes diagnosticados en la edad adulta, ya que estos tipos de tumores pueden aparecer en pacientes pedi\u00e1tricos, normalmente entre los 5 y los 14 a\u00f1os, y en adultos, normalmente entre los 50 y los 74 a\u00f1os. Los retos que afrontan los supervivientes adultos y pedi\u00e1tricos pueden ser muy parecidos.<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">\"Nos dimos cuenta de que los supervivientes adultos y sus cuidadores estaban ansiosos por recibir apoyo y acceder a recursos educativos y, al ampliar nuestra misi\u00f3n, podemos satisfacer esa necesidad\". declar\u00f3 Wood.<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Con esta nueva misi\u00f3n, la RAWF est\u00e1 trabajando para ofrecer a supervivientes y cuidadores recursos educativos a trav\u00e9s de conferencias y sesiones virtuales con expertos m\u00e9dicos, conectando a los supervivientes mediante reuniones de apoyo, colaborando con m\u00e9dicos e investigadores para encontrar nuevos enfoques terap\u00e9uticos para estas afecciones y desarrollando tecnolog\u00eda para ampliar el acceso a los recursos y mejorar la comunicaci\u00f3n m\u00e9dico-paciente.<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">\"Empezamos poco a poco y estamos creciendo estrat\u00e9gicamente para asegurarnos de que cubrimos un nicho espec\u00edfico\", dijo Wood. \"A medida que crezca nuestra junta directiva, aumentemos nuestra capacidad, desarrollemos un s\u00f3lido comit\u00e9 asesor cient\u00edfico y nos unamos en torno a esta nueva misi\u00f3n, soy optimista de que nuestro trabajo contribuir\u00e1 significativamente a un futuro m\u00e1s brillante para esta comunidad de supervivientes de tumores cerebrales.\"<\/p>\n<\/div>\n<div\n  class=\"sqs-block-button-container sqs-block-button-container--left\"\n  data-animation-role=\"button\"\n  data-alignment=\"left\"\n  data-button-size=\"medium\"\n  data-button-type=\"primary\"\n><br \/>\n<a\n    href=\"https:\/\/www.rawoodfoundation.org\/es\/hacer-un-donativo\/\"\n    class=\"sqs-block-button-element--medium sqs-button-element--primary sqs-block-button-element\"\n\n  ><br \/>\nApoye nuestro trabajo<br \/>\n<\/a><\/div>","protected":false},"excerpt":{"rendered":"<p class=\"\">La Fundaci\u00f3n Raymond A. Wood (RAWF) anuncia una nueva misi\u00f3n <strong>capacitar a los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios para mejorar su calidad de vida facilit\u00e1ndoles el acceso a la educaci\u00f3n, la tecnolog\u00eda y los tratamientos en evoluci\u00f3n.<\/strong> La misi\u00f3n ampl\u00eda el alcance de la fundaci\u00f3n para incluir a supervivientes adultos y se centra en aquellos tumores que ocupan la parte central del cerebro y afectan al sistema endocrino, los procesos metab\u00f3licos, la cognici\u00f3n y el comportamiento, la visi\u00f3n, el crecimiento, la respuesta al estr\u00e9s y otras funciones corporales importantes.<\/p>","protected":false},"author":6,"featured_media":60,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[41,30],"tags":[],"class_list":["post-59","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","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>The Raymond A. 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The mission expands the foundation\u2019s reach to include adult survivors and narrows its focus to those tumors that occupy the central part of the brain and impact the endocrine system, metabolic processes, cognition and behavior, vision, growth, stress response, and other important body functions.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.rawoodfoundation.org\/es\/2020\/05\/06\/2020-5-6-la-fundacion-raymond-a-wood-anuncia-su-nueva-mision\/\" \/>\n<meta property=\"og:site_name\" content=\"Raymond A. 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