{"id":127,"date":"2022-03-09T15:48:12","date_gmt":"2022-03-09T15:48:12","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2022\/03\/09\/2022-3-9-raymond-a-wood-foundation-welcomes-new-board-member-and-elects-new-chair\/"},"modified":"2023-08-22T19:39:30","modified_gmt":"2023-08-22T19:39:30","slug":"2022-3-9-la-fundacion-raymond-a-wood-da-la-bienvenida-a-un-nuevo-miembro-del-patronato-y-elige-nuevo-presidente","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2022\/03\/09\/2022-3-9-raymond-a-wood-foundation-welcomes-new-board-member-and-elects-new-chair\/","title":{"rendered":"La Fundaci\u00f3n Raymond A. Wood da la bienvenida a un nuevo miembro del Patronato y elige nuevo Presidente"},"content":{"rendered":"
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La Fundaci\u00f3n Raymond A. Wood (RAWF), una organizaci\u00f3n de defensa de los pacientes de enfermedades raras, cuya misi\u00f3n es ayudar a los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios (H-P) a mejorar su calidad de vida proporcion\u00e1ndoles acceso a la educaci\u00f3n, la tecnolog\u00eda y los tratamientos en evoluci\u00f3n, anuncia cambios interesantes en la junta directiva de la fundaci\u00f3n, como la incorporaci\u00f3n de Christine Selko y la elecci\u00f3n de Eugenie Hsu, Ph.D., como presidenta.<\/p>\n<\/div>\n

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Chris y su hijo, superviviente de un craneofaringioma desde hace 19 a\u00f1os<\/p>\n<\/div>\n<\/figcaption><\/figure>\n<\/div>\n

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Chris Selko, madre de una superviviente de craneofaringioma y defensora de la causa desde hace 19 a\u00f1os, se une a la Junta de la RAWF
\n<\/strong>Chris es profesora adjunta y lleva 25 a\u00f1os impartiendo clases de Composici\u00f3n Universitaria, Lectura y Escritura Evolutivas y ESL a una poblaci\u00f3n diversa en muchos entornos diferentes. En 2002, al menor de sus cuatro hijos le diagnosticaron un craneofaringioma y su vida cambi\u00f3 radicalmente. Comprometida a mejorar las circunstancias de su hijo, empez\u00f3 a trabajar en el \u00e1mbito de la defensa de los derechos. Chris dice que aprendi\u00f3 mucho y cometi\u00f3 muchos errores a lo largo de los \u00faltimos 19 a\u00f1os en su b\u00fasqueda de las mejores opciones posibles para que su hijo tuviera una vida plena y feliz, al tiempo que intentaba mantener a toda su familia intacta mientras se enfrentaban a los retos que surgieron con su diagn\u00f3stico.<\/p>\n

Chris ha trabajado con la Statewide Parent Advocacy Network como especialista en investigaci\u00f3n familiar y coordinadora de divulgaci\u00f3n de padres a padres. Sigue ayudando a las familias que se enfrentan al diagn\u00f3stico de un tumor cerebral como mentora de la Pediatric Brain Tumor Foundation.<\/p>\n

\"Me doy cuenta de que el viaje de cada familia es diferente; sin embargo, el miedo y los sentimientos de desesperaci\u00f3n que siente una familia con un diagn\u00f3stico de tumor son los mismos\", dijo Chris. \"Por esta raz\u00f3n, he trabajado para ayudar a otras familias que se enfrentan a la incertidumbre mientras lidian con un hijo enfermo. Mi objetivo es ofrecer apoyo y proporcionar toda la ayuda que pueda\".<\/p>\n

Chris cree que gracias a la din\u00e1mica labor de la comunidad RAWF, los supervivientes, como su hijo, encontrar\u00e1n las alternativas y soluciones que les dar\u00e1n la calidad de vida que toda persona merece.<\/p>\n

La Dra. Eugenie Hsu, miembro del Consejo, elegida Presidenta de RAW
\n<\/strong>Eugenie Hsu se uni\u00f3 a la junta directiva de RAWF en marzo de 2020, cuando la fundaci\u00f3n comenz\u00f3 a desarrollar su misi\u00f3n y su papel en la defensa de los supervivientes de tumores cerebrales H-P. En los \u00faltimos dos a\u00f1os, ha sido una fuerza impulsora detr\u00e1s del crecimiento de la fundaci\u00f3n. Es la presidenta del comit\u00e9 de comunicaciones, forma parte del comit\u00e9 de investigaci\u00f3n y modera un grupo mensual de apoyo a cuidadores para padres y cuidadores de adolescentes y adultos j\u00f3venes supervivientes de craneofaringioma. Adem\u00e1s, Eugenie desempe\u00f1\u00f3 un papel decisivo en el desarrollo de la solicitud de subvenci\u00f3n para la iniciativa Chan Zuckerberg Rare As One Cycle Two, que se concedi\u00f3 a RAWF en oto\u00f1o de 2021 y es transformadora en el crecimiento del trabajo de investigaci\u00f3n y la capacidad de RAWF. Tambi\u00e9n patrocin\u00f3 una campa\u00f1a de donaciones paralelas para Giving Tuesday que recaud\u00f3 casi $30.000 para la campa\u00f1a Roar for Rare de RAWF.<\/p>\n<\/div>\n

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Eugenie y su hijo, de 18 a\u00f1os, superviviente de un craneofaringioma<\/p>\n<\/div>\n<\/figcaption><\/figure>\n<\/div>\n

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Eugenie Hsu es psic\u00f3loga licenciada y se jubil\u00f3 en 2021 tras trabajar en plantilla en el Centro M\u00e9dico Kaiser Permanente Oakland en psiquiatr\u00eda de adultos desde 1994. Desde que se retir\u00f3 de Kaiser, Eugenie mantiene una pr\u00e1ctica privada donde se especializa en el tratamiento de sobrevivientes de trauma. Eugenie tiene una licenciatura en Psicolog\u00eda de la Universidad de California en Davis y un doctorado en Psicolog\u00eda Cl\u00ednica de la Escuela de Psicolog\u00eda Profesional de California.<\/p>\n

Despu\u00e9s de que a su hijo le diagnosticaran y trataran un tumor cerebral craneofaringioma cuando ten\u00eda 8 a\u00f1os, Eugenie se centr\u00f3 en encontrar soluciones y tratamientos para mejorar su calidad de vida y la de otros supervivientes. En 2016, llev\u00f3 a cabo un tratamiento experimental con su hijo utilizando la neurohormona oxitocina; posteriormente, relat\u00f3 sus experiencias en un blog muy le\u00eddo (Hope for HO) y el \u00e9xito del tratamiento le llev\u00f3 a publicar un libro titulado caso cl\u00ednico en el Journal of Clinical Endocrinology and Metabolism<\/a>.<\/p>\n

Seg\u00fan Eugenie, \"vivo convencida de que los defensores del paciente-cuidador pueden hacer avanzar la ciencia y las innovaciones para mejorar la salud y la calidad de vida de los pacientes.\"<\/p>\n

Crecer y evolucionar
\n<\/strong>En los pr\u00f3ximos meses, la RAWF ampliar\u00e1 su plantilla y desarrollar\u00e1 una hoja de ruta de investigaci\u00f3n en torno al craneofaringioma, adem\u00e1s de sus programas actuales, que incluyen el suministro de analizadores de sangre port\u00e1tiles a pacientes pedi\u00e1tricos con tumores cerebrales y diabetes ins\u00edpida complicada, la organizaci\u00f3n de eventos de aprendizaje mensuales, la planificaci\u00f3n de la conferencia virtual anual y la colaboraci\u00f3n en el desarrollo de un medidor de sodio de uso dom\u00e9stico.<\/p>\n

\"Somos realmente optimistas de que el crecimiento de los pr\u00f3ximos meses realmente posicionar\u00e1 a la Fundaci\u00f3n Raymond A. Wood como una voz fuerte para las soluciones en el tratamiento de estos tumores y la gesti\u00f3n continua de las complejidades a las que se enfrentan los supervivientes\", dijo Amy Wood, directora ejecutiva de RAWF. \"Estamos encantados de que Chris se una a la junta y Eugenie ocupe el puesto de presidenta porque su pasi\u00f3n y compromiso impulsar\u00e1n este trabajo a\u00fan m\u00e1s\".<\/p>\n

\u00bfC\u00f3mo participar?
\n<\/strong>El trabajo de la Fundaci\u00f3n Raymond A. Wood est\u00e1 financiado principalmente por donantes particulares. Contribuciones \u00fanicas, donaciones mensuales<\/a>, recaudaci\u00f3n de fondos<\/a>r o hacerse socio<\/a> son todas formas de apoyar y hacer crecer el trabajo de RAWF. La fundaci\u00f3n tambi\u00e9n busca personas comprometidas y apasionadas miembros del consejo<\/a> que tengan conocimientos de administraci\u00f3n de empresas, finanzas, marketing, atenci\u00f3n sanitaria y recaudaci\u00f3n de fondos para unirse a nuestra junta. Para m\u00e1s informaci\u00f3n sobre c\u00f3mo apoyar a RAWF, env\u00ede un correo electr\u00f3nico a Amy Wood a amyw@rawoodfoundation.org<\/a>.<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

La Fundaci\u00f3n Raymond A. Wood (RAWF), una organizaci\u00f3n de defensa de los pacientes de enfermedades raras, cuya misi\u00f3n es ayudar a los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios (H-P) a mejorar su calidad de vida proporcion\u00e1ndoles acceso a la educaci\u00f3n, la tecnolog\u00eda y los tratamientos en evoluci\u00f3n, anuncia cambios interesantes en la junta directiva de la fundaci\u00f3n, como la incorporaci\u00f3n de Christine Selko y la elecci\u00f3n de Eugenie Hsu, Ph.D., como presidenta.<\/p>","protected":false},"author":6,"featured_media":128,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[30,1],"tags":[],"class_list":["post-127","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rawf-news","category-uncategorized","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"\nRaymond A. 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