{"id":2199,"date":"2019-11-19T12:44:08","date_gmt":"2019-11-19T12:44:08","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2019\/11\/19\/participamos-zurich-maraton-donostia-san-sebastian\/"},"modified":"2026-03-02T12:01:50","modified_gmt":"2026-03-02T12:01:50","slug":"participamos-zurich-maraton-donostia-san-sebastian","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2019\/11\/19\/participamos-zurich-maraton-donostia-san-sebastian\/","title":{"rendered":"Participamos en el Zurich Marat\u00f3n de Donostia\/San Sebasti\u00e1n (24-11-19)"},"content":{"rendered":"

\"Aefat<\/p>\n

El Equipo Zurich Aefat<\/strong><\/a><\/span><\/strong> participar\u00e1 por tercer a\u00f1o en el Zurich Marat\u00f3n Donostia\/San Sebasti\u00e1n<\/a> <\/strong>del pr\u00f3ximo domingo. En esta ocasi\u00f3n los representantes ser\u00e1n Lola (11 a\u00f1os, Barcelona), \u00c1lex (16 a\u00f1os, Valencia), Javi (23 a\u00f1os, Murcia) y Jon (16 a\u00f1os, Vitoria-Gasteiz<\/strong>), afectados con la enfermedad. Participar\u00e1n en esta experiencia motivadora en sus sillas especiales, empujados durante los 42 km por un grupo de 16 corredores solidarios procedentes del Pa\u00eds Vasco, Logro\u00f1o, Barcelona y Huesca. Entre los runners se encuentra Kepa, padre de uno de los dos afectados en Euskadi, Hodei, de tres a\u00f1os; Alfonso, el abuelo de Lola; y el s\u00faper corredor de maratones SpiderAbel (el corredor de Amurrio que lleva m\u00e1s de 70 maratones disfrazado de Spiderman).<\/p>\n

Los corredores solidarios llevar\u00e1n de nuevo la camiseta con el lema \u00abCorre, frena la AT\u00bb<\/strong> y el \u201cImparables<\/strong>\u201d de Zurich. Aefat cuenta con m\u00e1s colaboradores solidarios. Olarain<\/a><\/strong>, alojamiento tur\u00edstico situado a cinco minutos de la playa de Ondarreta en San Sebasti\u00e1n y con especial sensibilidad ante la discapacidad, colabora por tercer a\u00f1o en el alojamiento de las familias. Tambi\u00e9n la empresa MRW<\/a><\/strong>, que ayuda al traslado de las sillas especiales y, por supuesto, la organizaci\u00f3n del marat\u00f3n<\/strong> que colabora activamente en la participaci\u00f3n del Equipo Zurich AT.<\/p>\n

Aefat ha creado un v\u00eddeo<\/strong> <\/a>con este equipo para buscar la solidaridad de la sociedad. El objetivo es financiar un proyecto de investigaci\u00f3n<\/strong> en la Cl\u00ednica Universidad de Navarra<\/a> que cuesta 150.000 euros y que podr\u00eda dar con una terapia para frenar el avance de la ataxia telangiectasia.<\/strong> La asociaci\u00f3n de familias ha abierto un reto en la plataforma Migranodearena<\/a> para que cualquier persona pueda colaborar f\u00e1cilmente en el avance de la investigaci\u00f3n. Zurich<\/strong><\/a>, implicada con Aefat desde 2017, aporta 20.000 euros anuales para la investigaci\u00f3n y 12 dorsales para cada marat\u00f3n.<\/p>\n

La ataxia telangiectasia<\/strong> (AT o A-T) se manifiesta habitualmente antes de los dos a\u00f1os de edad pero es compleja en su diagn\u00f3stico. 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, inmunodeficiencia, neumon\u00edas y otras complicaciones, adem\u00e1s de mayor probabilidad de c\u00e1ncer. Los afectados son conscientes de su enfermedad, ya que no afecta a sus facultades mentales, pero la AT les impide realizar ser independientes en las actividades b\u00e1sicas de la vida diaria pero tienen capacidad para pensar, sentir, amar y, por supuesto, para ser felices.<\/p>\n

Aefat<\/a><\/strong> es una asociaci\u00f3n sin \u00e1nimo de lucro creada en 2009 y declarada de utilidad p\u00fablica desde 2014, que est\u00e1 formada por familiares y personas relacionadas con enfermos de ataxia telangiectasia de diferentes puntos de Espa\u00f1a. Tambi\u00e9n mantiene contacto cercano con las familias de afectados en Iberoam\u00e9rica, y se relaciona con asociaciones similares europeas y americanas. Aefat pertenece a FEDER<\/a> (Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras) y FEDAES<\/a> (Federaci\u00f3n de Ataxias de Espa\u00f1a).<\/p>\n

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

\"Aefat<\/p>\n

El Equipo Zurich Aefat<\/strong><\/a><\/span><\/strong> participar\u00e1 por tercer a\u00f1o en el Zurich Marat\u00f3n Donostia\/San Sebasti\u00e1n<\/a> <\/strong>del pr\u00f3ximo domingo. En esta ocasi\u00f3n los representantes ser\u00e1n Lola (11 a\u00f1os, Barcelona), \u00c1lex (16 a\u00f1os, Valencia), Javi (23 a\u00f1os, Murcia) y Jon (16 a\u00f1os, Vitoria-Gasteiz<\/strong>), afectados con la enfermedad. Participar\u00e1n en esta experiencia motivadora en sus sillas especiales, empujados durante los 42 km por un grupo de 16 corredores solidarios procedentes del Pa\u00eds Vasco, Logro\u00f1o, Barcelona y Huesca. Entre los runners se encuentra Kepa, padre de uno de los dos afectados en Euskadi, Hodei, de tres a\u00f1os; Alfonso, el abuelo de Lola; y el s\u00faper corredor de maratones SpiderAbel (el corredor de Amurrio que lleva m\u00e1s de 70 maratones disfrazado de Spiderman).<\/p>\n","protected":false},"author":1,"featured_media":2198,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[807],"tags":[55,324,325,62,178,116,25,124,282],"class_list":["post-2199","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-deporte-solidario","tag-ataxia-telangiectasia","tag-corre-frena-la-at","tag-correfrenalaat","tag-enfermedades-raras","tag-granada-digital","tag-investigacion","tag-reto-solidario","tag-san-sebastian","tag-zurich"],"acf":[],"yoast_head":"\nParticipamos en el Zurich Marat\u00f3n de Donostia\/San Sebasti\u00e1n (24-11-19) - 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=\"Participamos en el Zurich Marat\u00f3n de Donostia\/San Sebasti\u00e1n (24-11-19) - Aefat\" \/>\n<meta property=\"og:description\" content=\"El Equipo Zurich Aefat participar\u00e1 por tercer a\u00f1o en el Zurich Marat\u00f3n Donostia\/San Sebasti\u00e1n del pr\u00f3ximo domingo. 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