{"id":182,"date":"2024-07-16T11:08:57","date_gmt":"2024-07-16T11:08:57","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/?p=182"},"modified":"2026-03-03T11:33:25","modified_gmt":"2026-03-03T11:33:25","slug":"18-000-euros-gracias-al-ii-festi-aefat-orduna","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2024\/07\/16\/18-000-euros-gracias-al-ii-festi-aefat-orduna\/","title":{"rendered":"\u00a118.000 euros gracias al II Festi Aefat Ordu\u00f1a!"},"content":{"rendered":"\t\t
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\u00a118.000 euros gracias al II Festi Aefat Ordu\u00f1a!<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Los organizadores voluntarios del II Festi Aefat Ordu\u00f1a (Bizkaia),<\/strong> que se celebr\u00f3 los pasado 31 de mayo y 1 de junio,\u00a0recaudaron\u00a018.000 euros<\/strong>\u00a0para la investigaci\u00f3n de la ataxia telangiectasia.\u00a0\ud83d\udc95 V\u00eddeo realizado por los organizadores voluntarios de este festival solidario, a los que queremos agradecer su esfuerzo, dedicaci\u00f3n y cari\u00f1o:\u00a0Luki Ortega, Iker Santocildes, Guillermo Ugalde, I\u00f1igo Santocildes y Jorge Ugalde, y a la familia de Hodei<\/strong>\u00a0(uno de nuestros tres chicos afectados en Euskadi).<\/p>

El Festi incluy\u00f3 una quedada motera, con actividades variadas, dinamizaci\u00f3n callejera, ruta en moto por la comarca, conciertos, txozna (barra de bar), parking vigilado y la opci\u00f3n de alojarse en el albergue de la localidad o hacer acampada gratuita. Las actividades para todos los p\u00fablicos, como zumba familiar, talleres, juegos, batukada, cabezudos, conciertos, sorteos… se celebraron en la Foru Plaza de Ordu\u00f1a\/Urdu\u00f1a (Bizkaia). Tambi\u00e9n\u00a0contaron con dos\u00a0exhibiciones de Eneko Mart\u00ednez, subcampe\u00f3n de Europa de trial en su categor\u00eda, proclamado este s\u00e1bado anterior en Italia.\u00a0En el aspecto musical, el II Festi Aefat Ordu\u00f1a ofreci\u00f3 los conciertos de la banda Santa Cecilia y la Coral de Ordu\u00f1a, Mario Malatestta, La excavadora, el tributo a AC\/DC de Bon Scott Revival Show y la DJ Elena Barker.\u00a0<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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Tanto los organizadores del Festi como los vecinos de la zona cumplen una larga trayectoria de colaboraci\u00f3n con la investigaci\u00f3n de la ataxia telangiectasia en distintos eventos solidarios, ya que uno de los ni\u00f1os con esta enfermedad rara reside cerca y acude al colegio en Ordu\u00f1a. Los padres de Hodei, Nerea y Kepa, tambi\u00e9n est\u00e1n metidos de lleno en la organizaci\u00f3n de este festival, junto a sus amigos, con el objetivo de recaudar fondos que empujen un poco m\u00e1s los\u00a0proyectos de investigaci\u00f3n<\/a>\u00a0que financia Aefat, la asociaci\u00f3n que agrupa a las familias con ni\u00f1os y j\u00f3venes afectados por ataxia telangiectasia en Espa\u00f1a, y con la esperanza de encontrar una cura o tratamiento.<\/p>

En este II Festi Aefat Ordu\u00f1a colaboraron, adem\u00e1s de los voluntarios, el Ayuntamiento de Ordu\u00f1a, la Diputaci\u00f3n Foral de Bizkaia, Kutxabank, Caja Rural de Navarra, y las empresas Pinturas Orizaegui, Pinbak, Laser Bakiola, Carpinter\u00eda Torre Anaiak, Mubea-Inauxa, Amurrio Ferrocarril, Garabi Estudio de Arquitectura, Gasolinera Petroencina y Eusko Label. Tambi\u00e9n colaboraron los concesionarios MBS Bolueta Kawasaki (Bilbao), Gorliz Bikers, y BMW Motorrad Bizkaia, entre otros.<\/p>

Respecto a entidades, grupos y asociaciones, colaboraron Izaskun del Cerro, Erauntsi Dantza Taldea, Getxa Goi Txistu Taldea, Bihotza Konpartsa, Urdu\u00f1ako ibilgailu klasikoen elkartea El Pil\u00f3n, la Asociaci\u00f3n de Mujeres Loraldi Elkartea, Marmitaren Elkartea, Olaran, Batture Batukada, Coral de Ordu\u00f1a y Banda Santa Cecilia, adem\u00e1s de los voluntarios que ayudaron en la log\u00edstica, montaje y en la atenci\u00f3n de la txozna.<\/p>

\ud83d\udc95 Tambi\u00e9n queremos agradecer, en nombre de todas las familias que formamos Aefat, la implicaci\u00f3n, ayuda y colaboraci\u00f3n de los asistentes (incluyendo por supuesto a todos los moteros \ud83c\udfcd\ufe0f\ud83c\udfcd\ufe0f\ud83c\udfcd\ufe0f), empresas colaboradoras, artistas, entidades, instituciones y voluntarios. Y a Rural Kutxa por su apoyo.\u00a0

\ud83d\udc94 Con estas acciones, consegu\u00eds que tengamos m\u00e1s esperanza en encontrar una cura o tratamiento. GRACIAS – MILA ESKER<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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Sobre Aefat<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Aefat 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<\/a>).<\/p>

En la actualidad, Aefat est\u00e1 cofinanciando 8 proyectos de investigaci\u00f3n<\/a> nacionales e internacionales, junto con asociaciones similares de otros pa\u00edses, y en total, desde 2015 suma m\u00e1s de 600.000 euros invertidos en 12 proyectos de investigaci\u00f3n de la ataxia telangiectasia. Aunque sigue siendo una enfermedad compleja y poco investigada, Aefat lucha con otras asociaciones de otros pa\u00edses, de pacientes con la misma enfermedad.<\/p>

Y entre sus objetivos tambi\u00e9n destaca la mejora de la calidad de vida de los pacientes y la sensibilizaci\u00f3n, pero la inversi\u00f3n en nuevas investigaciones es primordial para Aefat. La asociaci\u00f3n contin\u00faa recaudando fondos a trav\u00e9s de distintas acciones y retos solidarios impulsados por las familias, y sumando donaciones de particulares y empresas.<\/p>

Entre sus acciones solidarias, destaca el Festival Solidario Aitzina Folk<\/a>, creado en 2013 en Vitoria-Gasteiz, que ofrece m\u00e1s de 20 conciertos y talleres para todos los p\u00fablicos en cada edici\u00f3n. Y la creaci\u00f3n del Equipo Zurich Aefat<\/a> en 2017, que participa cada a\u00f1o en las cinco maratones que patrocina la empresa aseguradora en Espa\u00f1a (Sevilla, Barcelona, Madrid, San Sebasti\u00e1n y Valencia). Una iniciativa de deporte inclusivo que cuenta con la colaboraci\u00f3n de m\u00e1s de cien corredores solidarios de toda Espa\u00f1a, que empujan las sillas especiales de los ni\u00f1os y j\u00f3venes con ataxia telangiectasia durante esos 42 kil\u00f3metros en los diferentes maratones. Aefat tambi\u00e9n est\u00e1 presente en otros eventos ben\u00e9ficos y apoya diferentes retos<\/a> deportivos solidarios.<\/p>

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As\u00ed fue el programa del II Festi AEFAT Ordu\u00f1a:<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Viernes, 31 de mayo 2024. Foru Plaza:<\/strong><\/p>

18:00 h \u00a0\u00a0\u00a0Zumba familiar. Foru Plaza. Colabora Izaskun del Cerro<\/p>

19:30 h\u00a0\u00a0\u00a0 Recepci\u00f3n a las familias de Aefat. Foru Plaza. Colabora Erauntsi Dantza Taldea<\/p>

19:30 h\u00a0\u00a0\u00a0 Pintxo-pote musical + Parrillada. Foru Plaza. Colaboran los txistularis de Getxa-Goi Taldea<\/p>

22:30 h\u00a0\u00a0\u00a0 Comienzo del asado de ternera.\u00a0Foru Plaza.<\/p>

22:30 h\u00a0\u00a0\u00a0 DJ Varro. Foru Plaza. Colabora Bihotza Konpatsa<\/p>

S\u00e1bado, 1 de junio 2024:<\/strong><\/p>

09:30 h\u00a0\u00a0\u00a0\u00a0Inscripciones\u00a0\/ preinscripciones de moteros. Foru Plaza. Colabora Arando Korrikalari Taldea.<\/p>

10:00 h\u00a0\u00a0\u00a0\u00a0Exposici\u00f3n\u00a0de motos de participantes. Foru Plaza<\/p>

11:00 h\u00a0\u00a0\u00a0\u00a0Ruta motera\u00a0por la comarca con aperitivo. Colabora Urdu\u00f1ako ibilgailu klasikoen elkartea, El Pil\u00f3n.<\/p>

11:00 h\u00a0\u00a0\u00a0\u00a0Talleres solidarios. Foru Plaza. Colabora la Asociaci\u00f3n de Mujeres Loraldi Elkartea<\/p>

11:30 h\u00a0 \u00a0\u00a0Cabezudos. Foru Plaza.\u00a0Colabora Bihotza Konpartsa<\/p>

12:30 h\u00a0 \u00a0\u00a0Exhibici\u00f3n de Eneko Mart\u00ednez,\u00a0campe\u00f3n de\u00a0trial, uno de los 5 mejores en su categor\u00eda en Europa (Pase 1)<\/p>

13:00 h\u00a0 \u00a0\u00a0Regreso\u00a0de la ruta motera a la Foru Plaza<\/p>

13:30 h\u00a0 \u00a0\u00a0Aperitivo solidario. Foru Plaza<\/p>

\u00a0Paella solidaria de 1.000 raciones. Colabora Marmitaren Elkartea y Paellas de Bilbao.<\/p>

\u00a0Asado de ternera Eusko Label. 220 kg. Colabora Karlos Ibarrondo.<\/p>

13:30 h\u00a0\u00a0\u00a0\u00a0Animaci\u00f3n callejera. Sociedad Olaran y Arboledako Trikitrixa<\/p>

16:00 h\u00a0\u00a0\u00a0 Actividades de\u00a0entretenimiento: juegos \/ subastas…<\/p>

17:00 h\u00a0 \u00a0\u00a0Exhibici\u00f3n de Eneko Mart\u00ednez,\u00a0campe\u00f3n de\u00a0trial, uno de los 5 mejores en su categor\u00eda en Europa (Pase 2)<\/p>

17:30 h\u00a0\u00a0\u00a0\u00a0Pasacalles. Colabora Batture Batukada<\/p>

19:00 h\u00a0\u00a0\u00a0\u00a0Concierto\u00a0de la\u00a0Coral de Ordu\u00f1a y Banda Santa Cecilia. Iglesia Jesuitas<\/p>

20:00 h\u00a0\u00a0\u00a0\u00a0Concierto Mario Malatestta\u00a0(Colaboraci\u00f3n)<\/p>

22:00 h\u00a0\u00a0\u00a0\u00a0Concierto La Excavadora<\/p>

00:00 h\u00a0\u00a0\u00a0\u00a0Concierto Bon Scott Revival Show tributo AC\/DC<\/p>

02:00 h\u00a0 \u00a0\u00a0DJ Elena Barker\u00a0(Colaboraci\u00f3n)<\/p>

03:30 h\u00a0\u00a0\u00a0 Fin del Festi<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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Otros art\u00edculos que te pueden interesar<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

\u00a118.000 euros gracias al II Festi Aefat Ordu\u00f1a! 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