{"id":9,"date":"2017-07-13T18:42:53","date_gmt":"2017-07-13T18:42:53","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2017\/07\/13\/2017-7-13-survivors-of-a-rare-brain-tumor-and-their-families-meet-up-in-ocean-city\/"},"modified":"2023-08-01T19:34:20","modified_gmt":"2023-08-01T19:34:20","slug":"2017-7-13-supervivientes-de-un-raro-tumor-cerebral-y-sus-familias-se-reunen-en-ocean-city","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2017\/07\/13\/2017-7-13-survivors-of-a-rare-brain-tumor-and-their-families-meet-up-in-ocean-city\/","title":{"rendered":"Supervivientes de un raro tumor cerebral y sus familias se re\u00fanen en Ocean City"},"content":{"rendered":"<div class=\"sqs-html-content\">\n<p>Ocean City, MD - Los supervivientes de craneofaringioma, un tumor cerebral benigno raro y complejo, y sus familias se reunieron el s\u00e1bado en el picnic inaugural de supervivientes de craneofaringioma de la Costa Este en el parque Northside de Ocean City. El grupo tambi\u00e9n inclu\u00eda a c\u00f3nyuges, padres, hermanos y abuelos, que se prestan apoyo mutuo en Facebook como parte de una p\u00e1gina de grupo espec\u00edfica del tumor. El picnic fue organizado en parte por la Fundaci\u00f3n Raymond A. Wood (RAWF), cuya misi\u00f3n es proporcionar apoyo a la calidad de vida de los supervivientes de tumores cerebrales infantiles y sus familias.<\/p>\n<p>El craneofaringioma es una masa que crece a partir de un conjunto de c\u00e9lulas cercanas a la hip\u00f3fisis y ocupa las regiones selar y supraselar del cerebro. Puede causar da\u00f1os en la hip\u00f3fisis, el hipot\u00e1lamo y otras partes cercanas del cerebro. El tumor y el tratamiento pueden dejar a los pacientes con comorbilidades o efectos secundarios a largo plazo, como p\u00e9rdida de la funci\u00f3n hipofisaria, aumento de peso incontrolable, deficiencias de crecimiento, diabetes ins\u00edpida o incapacidad para controlar el equilibrio de l\u00edquidos en el organismo, insuficiencia suprarrenal, problemas sociales y de comportamiento, problemas de memoria y d\u00e9ficits cognitivos.<\/p>\n<p>La mayor\u00eda de los supervivientes asistentes fueron diagnosticados de ni\u00f1os. Los supervivientes ten\u00edan edades comprendidas entre los 6 y los 70 a\u00f1os y viajaron desde lugares tan lejanos como Florida, Georgia y New Hampshire.<\/p>\n<p>\"Esta es una oportunidad incre\u00edble para conectar en persona, compartir experiencias e intercambiar informaci\u00f3n\", dijo Amy Wood, directora de RAWF y madre de Alex, superviviente y alumno de preescolar de Ocean City Elementary School. \"Las afecciones de este tumor son tan delicadas y a menudo mal comprendidas en la comunidad m\u00e9dica. Compartir los descubrimientos de lo que funciona en el manejo diario es tan beneficioso\".<\/p>\n<p>En Redondo Beach (California) se celebra desde hace muchos a\u00f1os una reuni\u00f3n anual de supervivientes de la Costa Oeste, pero a finales del a\u00f1o pasado varios miembros propusieron la idea de organizar una versi\u00f3n para la Costa Este y decidieron que Ocean City era un lugar c\u00e9ntrico perfecto y un destino atractivo. Los asistentes disfrutaron de un hermoso d\u00eda en el parque, un almuerzo a la barbacoa y algunas rondas de cornhole.<\/p>\n<p>\"Creo que hoy todos lo hemos pasado muy bien conoci\u00e9ndonos en persona\", dijo Frederick Kunitz, superviviente y organizador del acto.  \"No hay nada como estar rodeado de otras personas que entienden lo que supone enfrentarse a este tumor\".<\/p>\n<p>RAWF, una organizaci\u00f3n ben\u00e9fica 501(c)(3) fundada a principios de este a\u00f1o, proporcion\u00f3 comida, asegur\u00f3 el lugar de celebraci\u00f3n e imprimi\u00f3 camisetas de recuerdo para los supervivientes. &nbsp;<\/p>\n<p>\"Los tumores cerebrales infantiles tienen una tasa de supervivencia del 66%, pero muchos de los tratamientos son muy agresivos para el cerebro en desarrollo y estos ni\u00f1os se enfrentan a toda una vida de desaf\u00edos\", dijo Wood. \"Con el aumento de los diagn\u00f3sticos, sentimos que necesit\u00e1bamos encontrar una forma de ayudar a los ni\u00f1os y a las familias que se enfrentan a los efectos continuos\".<\/p>\n<\/div>\n<div\n        class=\"image-block-outer-wrapper          layout-caption-below          design-layout-inline\"\n        data-test=\"image-block-inline-outer-wrapper\"\n    ><\/p>\n<figure\n            class=\"sqs-block-image-figure              intrinsic\"\n            style=\"max-width:864px;\"\n        ><\/p>\n<div\n\n\n              class=\"image-block-wrapper\"\n              data-animation-role=\"image\"\n\n  data-animation-override\n\n><\/p>\n<div class=\"sqs-image-shape-container-element              has-aspect-ratio\" style=\"                position: relative;                  padding-bottom:59.49074172973633%;                overflow: hidden;-webkit-mask-image: -webkit-radial-gradient(white, black);              \"\n              ><\/p>\n<p>                  <noscript><img decoding=\"async\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1499971271536-50EYU54Y1M7ATR950OY2\/cranio-picnic.jpg\" alt=\"Pie de foto18 supervivientes de craneofaringioma se reunieron el s\u00e1bado en el parque Northside para hacer un picnic: Primera fila: Landry Stamm (DE) y Alex Wood (MD) Segunda fila: Chris Harsch (Pensilvania), Emily Powell (Medicina), Sydni Gajewski (Pensilvania)...\" \/><\/noscript><img decoding=\"async\" class=\"thumb-image\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1499971271536-50EYU54Y1M7ATR950OY2\/cranio-picnic.jpg\" data-image=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1499971271536-50EYU54Y1M7ATR950OY2\/cranio-picnic.jpg\" data-image-dimensions=\"864x514\" data-image-focal-point=\"0.5,0.5\" alt=\"Pie de foto18 supervivientes de craneofaringioma se reunieron el s\u00e1bado en el parque Northside para hacer un picnic: Primera fila: Landry Stamm (DE) y Alex Wood (MD) Segunda fila: Chris Harsch (Pensilvania), Emily Powell (Medicina), Sydni Gajewski (Pensilvania)...\" data-load=\"false\" data-image-id=\"5967bec636e5d32ef572c54d\" data-type=\"image\" \/><\/p><\/div>\n<\/p><\/div><figcaption class=\"image-caption-wrapper\">\n<div class=\"image-caption\">\n<p><strong>Pie de foto<\/strong><\/p>\n<p>18 supervivientes de craneofaringioma, se reunieron en Northside Park para hacer un picnic el s\u00e1bado.<br \/>En la foto, de izquierda a derecha: Primera fila: Landry Stamm (DE) y Alex Wood (MD) Segunda fila: Chris Harsch (PA), Emily Powell (MD), Sydni Gajewski (PA) Fila posterior: Elise Rosati (NJ), Jake Borsh (NH), Isaac Feil (NJ), Frederick Kunitz (GA), A.J. Selko (NJ), Jonas, Bilenas (PA), Jacob Reid (WV), Britanny Rinker (WV)<\/p>\n<p>No aparecen en la foto pero asistieron: Mikey O'Connell (VA) y Christopher Ramirez (FL)<\/p>\n<p>Fotograf\u00eda: Emily Powell Photography<\/p>\n<\/div>\n<\/figcaption><\/figure>\n<\/p><\/div>","protected":false},"excerpt":{"rendered":"<p>Ocean City, MD - Los supervivientes de craneofaringioma, un tumor cerebral benigno raro y complejo, y sus familias se reunieron el s\u00e1bado en el picnic inaugural de supervivientes de craneofaringioma de la Costa Este en el parque Northside de Ocean City. El grupo tambi\u00e9n inclu\u00eda a c\u00f3nyuges, padres, hermanos y abuelos, que se prestan apoyo mutuo en Facebook como parte de una p\u00e1gina de grupo espec\u00edfica del tumor. El picnic fue organizado en parte por la Fundaci\u00f3n Raymond A. Wood (RAWF), cuya misi\u00f3n es proporcionar apoyo a la calidad de vida de los supervivientes de tumores cerebrales infantiles y sus familias.<\/p>","protected":false},"author":6,"featured_media":5594,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[41,8,1],"tags":[],"class_list":["post-9","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-events","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>Survivors of a Rare Brain Tumor and Their Families Meet Up in Ocean City - Raymond A. 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The group also included spouses, parents, siblings and grandparents, who provide support to each other on Facebook as part of a group page specific to the tumor. The picnic was organized in part by the Raymond A. Wood Foundation (RAWF), whose mission is to provide quality-of-life support for survivors of childhood brain tumors and their families.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.rawoodfoundation.org\/es\/2017\/07\/13\/2017-7-13-supervivientes-de-un-raro-tumor-cerebral-y-sus-familias-se-reunen-en-ocean-city\/\" \/>\n<meta property=\"og:site_name\" content=\"Raymond A. 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