{"id":2431,"date":"2021-10-16T12:48:03","date_gmt":"2021-10-16T12:48:03","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2021\/10\/16\/evento-solidario-en-orduna-vizcaya-este-domingo\/"},"modified":"2026-03-03T11:33:37","modified_gmt":"2026-03-03T11:33:37","slug":"evento-solidario-en-orduna-vizcaya-este-domingo","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2021\/10\/16\/evento-solidario-en-orduna-vizcaya-este-domingo\/","title":{"rendered":"Evento solidario en Ordu\u00f1a (Vizcaya) este domingo"},"content":{"rendered":"

\"Cartel<\/p>\n

Dos ciclistas y un corredor de maratones se unir\u00e1n este domingo 17 de octubre<\/strong> a las 10 de la ma\u00f1ana en Ordu\u00f1a<\/strong> (Bizkaia) para hacer 120 km en bicicleta y una marat\u00f3n<\/strong> al mismo tiempo, en un evento solidario \u00fanico <\/strong>que se desarrollar\u00e1 en la Foru Plaza<\/strong> para colaborar en la b\u00fasqueda de una cura para la ataxia telangiectasia. Como ya sab\u00e9is, una enfermedad rara y neurodegenerativa, a\u00fan sin cura ni tratamiento<\/strong>, que provoca una grave discapacidad progresiva en ni\u00f1os y j\u00f3venes, y que afecta a dos chicos en el Pa\u00eds Vasco y m\u00e1s de 30 en Espa\u00f1a.<\/p>\n

 <\/p>\n

Javi y Xabier Irabien<\/strong>, padre e hijo, completar\u00e1n 135 vueltas en bicicleta a la Foru Plaza, unos 78 km. A la vez, el atleta Spiderabel<\/strong> (Abel Fern\u00e1ndez Mendivil), correr\u00e1 los 42 km de una marat\u00f3n dando unas 71 vueltas a la misma plaza.<\/p>\n

Para colaborar en la investigaci\u00f3n, han abierto un reto para donar aqu\u00ed<\/strong> <\/a>en la plataforma de recaudaci\u00f3n de fondos Migranodearena<\/a><\/strong>. Adem\u00e1s, durante la ma\u00f1ana, se vender\u00e1n all\u00ed productos y putxera<\/em> solidarios, y se organizar\u00e1n distintas actividades<\/strong> para todos los p\u00fablicos, con la colaboraci\u00f3n de gente de la zona que se ha implicado en el proyecto.<\/p>\n

Los fondos recaudados se destinar\u00e1n a los proyectos de investigaci\u00f3n<\/a><\/strong> que desde Aefat estamos financiando para encontrar una cura o, al menos, un tratamiento para los ni\u00f1os y j\u00f3venes afectados. Los tres protagonistas de este evento son deportistas muy implicados con nuestra asociaci\u00f3n y han colaborado con nosotros en ocasiones anteriores.<\/p>\n

Para los que a\u00fan no la conoc\u00e9is, la ataxia telangiectasia es uno de los 300 tipos de ataxia que existen. Una enfermedad minoritaria que produce inmunodeficiencia, complicaciones respiratorias y m\u00e1s probabilidad de tener c\u00e1ncer<\/strong>. Los afectados son grandes luchadores, pero en los \u00faltimos a\u00f1os hemos perdido a cuatro j\u00f3venes.<\/p>\n

Aefat<\/strong> es una asociaci\u00f3n sin \u00e1nimo de lucro creada en 2009 y declarada de utilidad p\u00fablica desde 2014. Formamos parte de la alianza internacional A-T Global Alliance<\/a>. Tal como explica Patxi Vill\u00e9n,<\/strong> presidente de Aefat y padre de Jon, afectado de Vitoria-Gasteiz de 18 a\u00f1os, \u201csin iniciativas personales como las de estos deportistas, que se implican como si fueran familiares, ser\u00eda muy complicado financiar la investigaci\u00f3n, as\u00ed que estamos muy agradecidos. Buscar una cura es un proceso largo y complejo, porque las enfermedades que afectan a poca gente son las grandes olvidadas, pero con gente as\u00ed no nos sentimos tan solos\u201d.<\/p>\n

GRACIAS JAVI, XABIER Y ABEL, y todos los que est\u00e1is donando en este enlace<\/a> y en el evento en Ordu\u00f1a.<\/span><\/strong><\/p>\n

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

\"Cartel<\/p>\n

Dos ciclistas y un corredor de maratones se unir\u00e1n este domingo 17 de octubre<\/strong> a las 10 de la ma\u00f1ana en Ordu\u00f1a<\/strong> (Bizkaia) para hacer 120 km en bicicleta y una marat\u00f3n<\/strong> al mismo tiempo, en un evento solidario \u00fanico <\/strong>que se desarrollar\u00e1 en la Foru Plaza<\/strong> para colaborar en la b\u00fasqueda de una cura para la ataxia telangiectasia. Como ya sab\u00e9is, una enfermedad rara y neurodegenerativa, a\u00fan sin cura ni tratamiento<\/strong>, que provoca una grave discapacidad progresiva en ni\u00f1os y j\u00f3venes, y que afecta a dos chicos en el Pa\u00eds Vasco y m\u00e1s de 30 en Espa\u00f1a.<\/p>\n","protected":false},"author":1,"featured_media":2429,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[51],"tags":[494,493,62,489,205,335,185,491,126,492,490],"class_list":["post-2431","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actividades-solidarias","tag-120-km-por-aefat","tag-bizkaia","tag-enfermedades-raras","tag-javi-irabien","tag-la-verdad","tag-migranodearena","tag-murcia","tag-orduna","tag-tapones-solidarios","tag-vizcaya","tag-xabier-irabien"],"acf":[],"yoast_head":"\nEvento solidario en Ordu\u00f1a (Vizcaya) este domingo - 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=\"Evento solidario en Ordu\u00f1a (Vizcaya) este domingo - Aefat\" \/>\n<meta property=\"og:description\" content=\"Dos ciclistas y un corredor de maratones se unir\u00e1n este domingo 17 de octubre a las 10 de la ma\u00f1ana en Ordu\u00f1a (Bizkaia) para hacer 120 km en bicicleta y una marat\u00f3n al mismo tiempo, en un evento solidario \u00fanico que se desarrollar\u00e1 en la Foru Plaza para colaborar en la b\u00fasqueda de una cura para la ataxia telangiectasia. 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