{"id":119,"date":"2021-11-03T16:58:04","date_gmt":"2021-11-03T16:58:04","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2021\/11\/03\/rao-grantee\/"},"modified":"2021-11-03T16:58:04","modified_gmt":"2021-11-03T16:58:04","slug":"becario-de-rao","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2021\/11\/03\/rao-grantee\/","title":{"rendered":"La Fundaci\u00f3n Raymond A. Wood, beneficiaria de la red Rare As One de la Iniciativa Chan Zuckerberg"},"content":{"rendered":"<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space:pre-wrap;\"><em>Ocean City, MD <\/em>- Hoy se ha anunciado que el <a href=\"https:\/\/www.rawoodfoundation.org\/es\/\"><span style=\"text-decoration:underline\">Fundaci\u00f3n Raymond A. Wood<\/span><\/a> (RAWF), una organizaci\u00f3n de defensa de las enfermedades raras dirigida por pacientes supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios, ha sido seleccionada como beneficiaria de la <a href=\"https:\/\/chanzuckerberg.com\/\"><span style=\"text-decoration:underline\">Iniciativa Chan Zuckerberg<\/span><\/a> (CZI) Rare As One Network, cuyo objetivo es apoyar y elevar el trabajo que las comunidades de pacientes est\u00e1n realizando para impulsar el progreso en la lucha contra las enfermedades raras.&nbsp;<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Fundada en 2017 para empoderar a los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios con una mejor calidad de vida proporcion\u00e1ndoles acceso a la educaci\u00f3n, la tecnolog\u00eda y los tratamientos en evoluci\u00f3n, RAWF es una de las 20 organizaciones que se unen a las 30 que fueron seleccionadas en el primer ciclo de esta iniciativa. La subvenci\u00f3n de $600.000 concedida a lo largo de un periodo de tres a\u00f1os ayudar\u00e1 a RAWF y a los dem\u00e1s nuevos beneficiarios a: 1) impulsar el desarrollo de una red internacional de investigaci\u00f3n colaborativa dirigida por pacientes en el \u00e1mbito de su enfermedad; 2) reforzar su capacidad organizativa; 3) convocar a sus comunidades; y 4) alinear a pacientes e investigadores en torno a prioridades compartidas.<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">En concreto, RAWF pretende crear un colectivo en torno al raro tumor cerebral craneofaringioma. Este tumor -aunque benigno- puede crecer e invadir estructuras importantes (el hipot\u00e1lamo y la hip\u00f3fisis, estrechamente relacionados) en las profundidades del cerebro que controlan gran parte de las funciones del organismo. Harvey Cushing, el \"padre de la neurocirug\u00eda moderna\", lleg\u00f3 a declararlo \"el m\u00e1s formidable de los tumores intracraneales\". Los retrasos en el diagn\u00f3stico complican a\u00fan m\u00e1s el tratamiento, que puede dar lugar a disfunciones del sistema endocrino, afecciones m\u00e9dicas dif\u00edciles y deterioro cognitivo. La colaboraci\u00f3n entre pacientes, investigadores y cl\u00ednicos es fundamental para abrir puertas a mejores resultados terap\u00e9uticos y a una gesti\u00f3n continuada de los cuidados.<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\"><em>\"Como investigador traslacional y cl\u00ednico, poder asociarnos con una organizaci\u00f3n de defensa s\u00f3lida como RAWF nos da muchas m\u00e1s posibilidades de \u00e9xito\".<\/em> dijo la Dra. Shana McCormack, neuroendocrin\u00f3loga del Hospital Infantil de Filadelfia (CHOP) y miembro de <a href=\"https:\/\/www.rawoodfoundation.org\/es\/sab\/\"><span style=\"text-decoration:underline\">Consejo Cient\u00edfico Asesor de RAWF<\/span><\/a>. <em>\"Adem\u00e1s, una red de investigadores multidisciplinares garantiza que seguiremos avanzando juntos en este campo, y a un ritmo a\u00fan m\u00e1s r\u00e1pido. Como parte de la Red CZI Rare As One, RAWF construir\u00e1 recursos a\u00fan m\u00e1s valiosos al servicio de su importante misi\u00f3n.\"<\/em><\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">CZI reconoce que la odisea del diagn\u00f3stico es un reto acuciante al que se enfrentan las comunidades de enfermedades raras en su intento de construir comunidades fuertes, diversas e inclusivas, as\u00ed como de hacer avanzar la ciencia hacia el desarrollo de tratamientos y curas para todos los afectados por la enfermedad. En consecuencia, en este segundo ciclo de financiaci\u00f3n se hizo m\u00e1s hincapi\u00e9 en el potencial para abordar los retos de la investigaci\u00f3n relacionados con el diagn\u00f3stico y la importancia de abordar la diversidad y la inclusi\u00f3n en esos esfuerzos.&nbsp;<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\"><em>\"Tener el honor de formar parte de la Red Rare As One no podr\u00eda haber ocurrido en mejor momento\". <\/em>dijo <a href=\"https:\/\/www.linkedin.com\/in\/amymwood\/\"><span style=\"text-decoration:underline\">Amy Wood<\/span><\/a>Director Ejecutivo de RAWF. <em>\"Esto nos permitir\u00e1 crecer y fortalecer nuestra red de pacientes e investigadores para encontrar soluciones y llegar a poblaciones desatendidas que probablemente podr\u00edan utilizar los recursos y el apoyo que ofrecemos.\"<\/em><\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Cori Bargmann, Directora Cient\u00edfica del CZI, prosigui\u00f3: \"<em>Para que la investigaci\u00f3n biom\u00e9dica en enfermedades raras avance r\u00e1pida y eficazmente, los pacientes deben ser socios de pleno derecho de los cient\u00edficos y m\u00e9dicos en la investigaci\u00f3n. Estamos orgullosos de ampliar nuestra cohorte de beneficiarios de Rare As One y seguir apoyando el ecosistema de las enfermedades raras mientras trabajamos juntos hacia el diagn\u00f3stico, los tratamientos y las curas.\" <\/em><a href=\"https:\/\/chanzuckerberg.com\/science\/programs-resources\/rare-as-one\/network\/\"><span style=\"text-decoration:underline\">Ver la lista completa de beneficiarios.<\/span><\/a><\/p>\n<h2 style=\"white-space:pre-wrap;\"><strong>Acerca de la Fundaci\u00f3n Raymond A. Wood&nbsp;<\/strong><\/h2>\n<p class=\"\" style=\"white-space:pre-wrap;\">La RAWF fue fundada por Shawn y Amy Wood tras diagnosticar a su hijo Alex, de cuatro a\u00f1os (ahora tiene once), un tumor cerebral poco frecuente, el craneofaringioma. La intervenci\u00f3n quir\u00fargica de urgencia para tratar el tumor dio lugar a una serie de enfermedades que los Wood pronto se dieron cuenta de que carec\u00edan de la investigaci\u00f3n y el apoyo adecuados. La RAWF sigue abordando las necesidades cr\u00edticas e insatisfechas de los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios y sus familias, encabezando proyectos como el desarrollo de un medidor de sodio para uso dom\u00e9stico destinado a los supervivientes de diabetes ins\u00edpida, al tiempo que ofrece oportunidades de formaci\u00f3n, como una conferencia anual sobre la diabetes ins\u00edpida.<a href=\"https:\/\/pituitarybraintumorconference.com\/\"><span style=\"text-decoration:underline\"> Conferencia sobre tumores cerebrales hipofisarios<\/span><\/a> en colaboraci\u00f3n con CHOP. RAWF tambi\u00e9n trabaja para concienciar sobre los retos que plantean estos tumores cerebrales a lo largo de toda la vida -la \u00faltima vez organizando una sesi\u00f3n de escucha de pacientes con la FDA sobre la obesidad hipotal\u00e1mica, una de las afecciones poco frecuentes que pueden derivarse de estos tumores- para ayudar a abrir v\u00edas a la innovaci\u00f3n en el tratamiento.<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p class=\"\"><em>Ocean City, MD (3 de noviembre de 2021) <\/em>- Hoy se ha anunciado que el <a href=\"https:\/\/www.rawoodfoundation.org\/es\/\"><span style=\"text-decoration:underline\">Fundaci\u00f3n Raymond A. Wood<\/span><\/a> (RAWF), una organizaci\u00f3n de defensa de las enfermedades raras dirigida por pacientes supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios, ha sido seleccionada como beneficiaria de la <a href=\"https:\/\/chanzuckerberg.com\/\"><span style=\"text-decoration:underline\">Iniciativa Chan Zuckerberg<\/span><\/a> (CZI) Rare As One Network, cuyo objetivo es apoyar y elevar el trabajo que las comunidades de pacientes est\u00e1n realizando para impulsar el progreso en la lucha contra las enfermedades raras.<\/p>","protected":false},"author":1,"featured_media":120,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-119","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>Raymond A. 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