{"id":2196,"date":"2019-11-05T09:29:36","date_gmt":"2019-11-05T09:29:36","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2019\/11\/05\/la-ataxia-telangiectasia-visible-en-ferrol-con-un-sorteo-benefico\/"},"modified":"2026-03-03T11:33:48","modified_gmt":"2026-03-03T11:33:48","slug":"la-ataxia-telangiectasia-visible-en-ferrol-con-un-sorteo-benefico","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2019\/11\/05\/la-ataxia-telangiectasia-visible-en-ferrol-con-un-sorteo-benefico\/","title":{"rendered":"La ataxia telangiectasia, visible en Ferrol con un sorteo ben\u00e9fico"},"content":{"rendered":"

<\/a><\/p>\n

\"Sorteo<\/p>\n

La investigaci\u00f3n es nuestra \u00fanica esperanza. Por eso <\/a>en Aefat<\/a>, la asociaci\u00f3n que agrupa a las familias con ni\u00f1os y j\u00f3venes afectados por ataxia telangiectasia en Espa\u00f1a, destinamos todos los fondos que recaudamos a distintos proyectos de investigaci\u00f3n. En la actualidad, Aefat financia un proyecto en la Cl\u00ednica Universidad de Navarra<\/a><\/strong> para dar con una terapia g\u00e9nica que frene algunos de los duros efectos de la enfermedad en sus hijos, como las complicaciones respiratorias y su tendencia a los tumores.<\/span><\/p>\n

Para apoyar esa investigaci\u00f3n, Mariv\u00ed V\u00e1zquez, secretaria de Aefat y madre de la ferrolana Sonia, de 18 a\u00f1os, afectada con la enfermedad, <\/strong>organizar\u00e1 un gran sorteo ben\u00e9fico este viernes, 8 de noviembre<\/strong>, a las 20,15 horas<\/strong> en el Casino Ferrolano<\/strong>. La entidad ferrolana ha cedido su espacio para este evento solidario que pretende recaudar fondos para la investigaci\u00f3n y tambi\u00e9n dar visibilidad a la ataxia telangiectasia, una enfermedad rara, gen\u00e9tica y neurodegenerativa que afecta a unos 30 ni\u00f1os y j\u00f3venes en Espa\u00f1a, dos de ellos en Galicia.<\/a><\/span><\/p>\n

El sorteo solidario ha contado con la colaboraci\u00f3n de numerosas empresas y comercios de la zona que han cedido m\u00e1s de 25 regalos para sortear entre los participantes de este evento, que podr\u00e1n contribuir con un donativo\/entrada de 5 euros<\/strong>. Entre los regalos se sortear\u00e1n cestas de productos de alimentaci\u00f3n, prendas de lencer\u00eda y moda, objetos de decoraci\u00f3n, relojes, utensilios de cocina, material de oficina, camisetas del Racing Club de Ferrol, del O Parrulo F\u00fatbol Sala y del Baxi Uni Ferrol, adem\u00e1s de un bal\u00f3n firmado del Club Rugby Ferrol, entre otros. Tambi\u00e9n se ha habilitado una \u201cFila 0<\/strong>\u201d para aquellos que no puedan asistir, para que puedan aportar la cantidad que deseen a esta causa, ingresando su donativo en la cuenta de Aefat ES39 2100 5866 5502 0004 1666.<\/strong><\/a><\/span><\/p>\n

Las familias que componen Aefat, junto con colaboradores y voluntarios, organizan distintas actividades solidarias en distintas ciudades <\/strong>desde que se cre\u00f3 la asociaci\u00f3n en 2009: al inicio, recogida de tapones de pl\u00e1stico por todo el Estado, y en la actualidad, organizan el Festival Solidario Aitzina Folk en Vitoria-Gasteiz (este a\u00f1o ser\u00e1 la s\u00e9ptima edici\u00f3n), una carrera solidaria en M\u00e1laga (en septiembre se celebr\u00f3 la quinta edici\u00f3n) y desde el a\u00f1o 2016 participan en las cuatro grandes maratones que la Zurich patrocina en Espa\u00f1a: M\u00e1laga, Barcelona, Sevilla y Donostia\/San Sebasti\u00e1n, con el apoyo de la compa\u00f1\u00eda aseguradora (Equipo Zurich Aefat). Tambi\u00e9n participan con los ni\u00f1os y j\u00f3venes afectados en otras competiciones deportivas en Valencia y C\u00e1diz, y en eventos culturales solidarios de todo tipo.<\/a><\/span><\/p>\n

Como algunos ya sab\u00e9is, Aefat<\/strong> es una asociaci\u00f3n sin \u00e1nimo de lucro declarada de utilidad p\u00fablica desde 2014, que pertenece a FEDER (Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras) y FEDAES (Federaci\u00f3n de Ataxias de Espa\u00f1a). Aefat est\u00e1 formada por unas 30 familias con afectados por ataxia telangiectasia de diferentes puntos de Espa\u00f1a, entre ellos Sonia, de 18 a\u00f1os de Ferrol, y Patricia, de 30 a\u00f1os de Lal\u00edn (Pontevedra).<\/a><\/span><\/p>\n

Para los que no la conoc\u00e9is, la ataxia telangiectasia (AT) <\/strong>es una enfermedad minoritaria, gen\u00e9tica y neurodegenerativa que se manifiesta habitualmente antes de los dos a\u00f1os de edad. Es multisist\u00e9mica y discapacitante, afecta a las funciones de diferentes \u00f3rganos y provoca incapacidad de coordinar movimientos, p\u00e9rdida progresiva de movilidad (hacia los 9 a\u00f1os se necesita silla de ruedas), dificultad en el habla, estancamiento en el crecimiento, inmunodeficiencia, envejecimiento prematuro, dificultades para comer, problemas en la piel y en la visi\u00f3n, neumon\u00edas y otras complicaciones respiratorias, son m\u00e1s proclives a los tumores… A pesar de su discapacidad f\u00edsica progresiva, los afectados son plenamente conscientes de su enfermedad.<\/a><\/span><\/p>\n

(Abajo, Sonia, durante su participaci\u00f3n en la pasada Zurich Marat\u00f3n de Donostia\/San Sebasti\u00e1n 2018)<\/em><\/span><\/p>\n

\"AEFAT<\/p>\n","protected":false},"excerpt":{"rendered":"

<\/a><\/p>\n

\"Sorteo<\/p>\n

La investigaci\u00f3n es nuestra \u00fanica esperanza. Por eso <\/a>en Aefat<\/a>, la asociaci\u00f3n que agrupa a las familias con ni\u00f1os y j\u00f3venes afectados por ataxia telangiectasia en Espa\u00f1a, destinamos todos los fondos que recaudamos a distintos proyectos de investigaci\u00f3n. En la actualidad, Aefat financia un proyecto en la Cl\u00ednica Universidad de Navarra<\/a><\/strong> para dar con una terapia g\u00e9nica que frene algunos de los duros efectos de la enfermedad en sus hijos, como las complicaciones respiratorias y su tendencia a los tumores.<\/span><\/p>\n

Para apoyar esa investigaci\u00f3n, Mariv\u00ed V\u00e1zquez, secretaria de Aefat y madre de la ferrolana Sonia, de 18 a\u00f1os, afectada con la enfermedad, <\/strong>organizar\u00e1 un gran sorteo ben\u00e9fico este viernes, 8 de noviembre<\/strong>, a las 20,15 horas<\/strong> en el Casino Ferrolano<\/strong>. La entidad ferrolana ha cedido su espacio para este evento solidario que pretende recaudar fondos para la investigaci\u00f3n y tambi\u00e9n dar visibilidad a la ataxia telangiectasia, una enfermedad rara, gen\u00e9tica y neurodegenerativa que afecta a unos 30 ni\u00f1os y j\u00f3venes en Espa\u00f1a, dos de ellos en Galicia.<\/a><\/span><\/p>\n","protected":false},"author":1,"featured_media":2194,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[51],"tags":[290,60,278,313,316,182,183,315,317,314],"class_list":["post-2196","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actividades-solidarias","tag-a-coruna","tag-aefat","tag-ataxia-telangientasia","tag-ferrol","tag-galicia","tag-portal-local","tag-sara","tag-sorteo","tag-sorteo-benefico","tag-sorteo-solidario"],"acf":[],"yoast_head":"\nLa ataxia telangiectasia, visible en Ferrol con un sorteo ben\u00e9fico - Aefat<\/title>\n<meta name=\"robots\" content=\"noindex, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"La ataxia telangiectasia, visible en Ferrol con un sorteo ben\u00e9fico - Aefat\" \/>\n<meta property=\"og:description\" content=\"La investigaci\u00f3n es nuestra \u00fanica esperanza. 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