{"id":2524,"date":"2022-02-24T12:02:22","date_gmt":"2022-02-24T12:02:22","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/02\/24\/nace-el-i-festi-aefat-urduna-en-el-pais-vasco\/"},"modified":"2026-03-03T11:33:37","modified_gmt":"2026-03-03T11:33:37","slug":"nace-el-i-festi-aefat-urduna-en-el-pais-vasco","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/02\/24\/nace-el-i-festi-aefat-urduna-en-el-pais-vasco\/","title":{"rendered":"Nace el I Festi Aefat Urdu\u00f1a en el Pa\u00eds Vasco"},"content":{"rendered":"

\"Cartel<\/p>\n

 VENTA DE ENTRADAS EN ESTE ENLACE<\/a><\/span><\/strong>.<\/span><\/p>\n

Aunque la pandemia ha retrasado su celebraci\u00f3n, un grupo de amigos lleva ya varios a\u00f1os planificando la organizaci\u00f3n del \u201cI Festi Aefat Urdu\u00f1a 2022\u201d<\/strong>, un festival de m\u00fasica y actividades para toda la familia que se celebrar\u00e1 en Ordu\u00f1a (Vizcaya) los d\u00edas 24 y 25 de junio<\/strong>.<\/p>\n

La idea surgi\u00f3 para apoyar a unos amigos de la zona que tienen un hijo peque\u00f1o con ataxia telangiectasia, una enfermedad rara que a\u00fan no tiene cura ni tratamiento, y que provoca una discapacidad f\u00edsica progresiva y m\u00e1s riesgo de c\u00e1ncer, entre otras complicaciones.<\/p>\n

La gente de la zona, los comercios, las empresas y los ayuntamientos ya llevan tiempo implic\u00e1ndose con Aefat, la asociaci\u00f3n que agrupa a las familias en Espa\u00f1a, con dos afectados en el Pa\u00eds Vasco y casi 40 en todo el Estado. Se han organizado distintas actividades solidarias, retos deportivos, recogida de tapones\u2026 Pero como explica Jorge Ugalde<\/strong>, portavoz de los organizadores, \u201cnunca es suficiente cuando es una enfermedad degenerativa y no hay apenas investigaci\u00f3n, tenemos que apoyarles para que desde la asociaci\u00f3n puedan financiar m\u00e1s proyectos y poder avanzar m\u00e1s r\u00e1pido. Les ha tocado a ellos, porque es una loter\u00eda gen\u00e9tica, pero nos puede tocar a cualquiera, y hay que ponerse en su piel\u201d.<\/p>\n

El festival contar\u00e1 con las actuaciones de la emblem\u00e1tica banda sevillana de rock Reincidentes<\/strong>, y los grupos vascos ETS <\/strong>(En Tol Sarmiento<\/strong>), la banda de heavy-bluegrass Moonshine Wagon, y Modus Operandi. <\/strong>Adem\u00e1s, pinchar\u00e1n su m\u00fasica DJames<\/strong> y DJ Turru<\/strong>.<\/p>\n

Actuar\u00e1 tambi\u00e9n Erauntsi Dantza Taldea<\/strong> y el festival contar\u00e1 con numerosas actividades<\/strong> para todos los p\u00fablicos: pasacalles de txistularis, concurso de tortillas, juegos infantiles, cabezudos con Bihotza Konpartsa y la colaboraci\u00f3n del maratoniano de Amurrio SpiderAbel<\/em>, con m\u00e1s de 80 maratones a sus espaldas. Tambi\u00e9n se vender\u00e1n productos solidarios y habr\u00e1 servicio de barra de bar.<\/p>\n

Jorge Ugalde, Aitor Lanseros e I\u00f1igo Santocildes<\/strong> son los tres organizadores voluntarios que se han lanzado a organizar un festival al que podr\u00e1n asistir hasta 2.800 personas en el aparcamiento de Autocaravanas de Ordu\u00f1a. Aunque no es su trabajo, tienen experiencia en la organizaci\u00f3n de otros eventos deportivos en la zona.<\/p>\n

Patxi Vill\u00e9n<\/strong>, presidente de Aefat y padre de Jon, otro chico con ataxia telangiectasia de Vitoria-Gasteiz, ha querido mostrar su agradecimiento. \u201cDesde Aefat tambi\u00e9n organizamos desde hace nueve a\u00f1os el festival solidario Aitzina Folk en Vitoria-Gasteiz con voluntarios y colaboradores, tambi\u00e9n todo a beneficio de la investigaci\u00f3n, y s\u00e9 el esfuerzo que supone montar todo, as\u00ed que agradecemos mucho la labor tit\u00e1nica que est\u00e1n realizando por nosotros, por Hodei y Jon, y por todos los ni\u00f1os y j\u00f3venes que les ha tocado lidiar con esta enfermedad rara, y los que vendr\u00e1n. Tambi\u00e9n a las entidades y empresas que colaboran, porque sin todos ellos, y sin el p\u00fablico que colabore, es imposible tener esperanza en encontrar una cura\u201d.<\/p>\n

El bono<\/strong> para los dos d\u00edas costar\u00e1 30 euros y la entrada por un d\u00eda 20 euros si se adquiere antes del 30 de abril. Tambi\u00e9n se habilita una \u201cfila 0<\/strong>\u201d para aquellos que no puedan asistir pero quieran colaborar. Las entradas saldr\u00e1n a la venta el martes 1 de marzo <\/strong><\/span>y se podr\u00e1n adquirir en ESTE ENLACE<\/span><\/strong><\/a>.<\/p>\n

El festival se anunciar\u00e1 ya este fin de semana<\/strong>, aprovechando la celebraci\u00f3n del carnaval de Ordu\u00f1a. Por el momento, han confirmado su colaboraci\u00f3n<\/strong> el Ayuntamiento de Ordu\u00f1a y Protecci\u00f3n Civil de Ordu\u00f1a, el Ayuntamiento de Amurrio, el Ayuntamiento de Ugao-Miraballes, y las empresas Baga-Biga, Bebidas Olabuenaga, Bihotza konpartsa, Erauntsi Dantza Taldea, Kelan, Segurilight, Orkatz Basolanak, pinturas Orizaegui, Apartamentos Ciudad de Ordu\u00f1a, Kalaka (juegos de madera, Enkarki, Pinbak, Laser Bakiola, Gasolinera Petroencina, Carpinter\u00eda Torre Anaiak, Eukeni, Amurrio Ferrocarriles y Equipos, Transportes Saratxaga y Pescader\u00eda-Fruter\u00eda Onena.<\/p>\n

La ataxia telangiectasia (AT o A-T) es uno de los 300 tipos de ataxia que existen. Es una enfermedad gen\u00e9tica y neurodegenerativa que obliga a los afectados a usar silla de ruedas hacia los 9 a\u00f1os. Aefat<\/strong> es una asociaci\u00f3n sin \u00e1nimo de lucro creada en 2009 y declarada de utilidad p\u00fablica desde 2014. Pertenece a FEDER (Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras), FEDAES (Federaci\u00f3n de Ataxias de Espa\u00f1a) y la entidad internacional A-T Global Alliance (www.cureat.org).<\/p>\n","protected":false},"excerpt":{"rendered":"

\"Cartel<\/p>\n

 VENTA DE ENTRADAS EN ESTE ENLACE<\/a><\/span><\/strong>.<\/span><\/p>\n

Aunque la pandemia ha retrasado su celebraci\u00f3n, un grupo de amigos lleva ya varios a\u00f1os planificando la organizaci\u00f3n del \u201cI Festi Aefat Urdu\u00f1a 2022\u201d<\/strong>, un festival de m\u00fasica y actividades para toda la familia que se celebrar\u00e1 en Ordu\u00f1a (Vizcaya) los d\u00edas 24 y 25 de junio<\/strong>.<\/p>\n","protected":false},"author":1,"featured_media":2523,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[51],"tags":[60,55,520,62,521,518,516,112,484,469,519,517],"class_list":["post-2524","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actividades-solidarias","tag-aefat","tag-ataxia-telangiectasia","tag-conciertos","tag-enfermedades-raras","tag-euskadi","tag-festi","tag-festi-aefat-urduna","tag-festival","tag-musica","tag-pais-vasco","tag-reincidentes","tag-urduna"],"acf":[],"yoast_head":"\nNace el I Festi Aefat Urdu\u00f1a en el Pa\u00eds Vasco - 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=\"Nace el I Festi Aefat Urdu\u00f1a en el Pa\u00eds Vasco - Aefat\" \/>\n<meta property=\"og:description\" content=\" VENTA DE ENTRADAS EN ESTE ENLACE. 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