{"id":2573,"date":"2022-11-23T19:22:22","date_gmt":"2022-11-23T19:22:22","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/11\/23\/buscamos-apoyo-y-visibilidad-participando-en-el-zurich-maraton-de-san-sebastian-2022\/"},"modified":"2026-03-02T12:00:51","modified_gmt":"2026-03-02T12:00:51","slug":"buscamos-apoyo-y-visibilidad-participando-en-el-zurich-maraton-de-san-sebastian-2022","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/11\/23\/buscamos-apoyo-y-visibilidad-participando-en-el-zurich-maraton-de-san-sebastian-2022\/","title":{"rendered":"Buscamos apoyo y visibilidad participando en el Zurich Marat\u00f3n de San Sebasti\u00e1n 2022"},"content":{"rendered":"<p style=\"text-align: justify;\"><img fetchpriority=\"high\" decoding=\"async\" class=\" size-full wp-image-2439\" src=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/AEFAT_Zurich_Maraton_Donostia_Foto_Xavier_dArquer_5.jpg\" alt=\"AEFAT Zurich Marat\u00f3n Donostia san sebastian ataxia telangiectasia\" width=\"1181\" height=\"787\" style=\"display: block; margin-left: auto; margin-right: auto;\" srcset=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/AEFAT_Zurich_Maraton_Donostia_Foto_Xavier_dArquer_5.jpg 1181w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/AEFAT_Zurich_Maraton_Donostia_Foto_Xavier_dArquer_5-300x200.jpg 300w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/AEFAT_Zurich_Maraton_Donostia_Foto_Xavier_dArquer_5-1024x682.jpg 1024w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/AEFAT_Zurich_Maraton_Donostia_Foto_Xavier_dArquer_5-768x512.jpg 768w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/AEFAT_Zurich_Maraton_Donostia_Foto_Xavier_dArquer_5-18x12.jpg 18w\" sizes=\"(max-width: 1181px) 100vw, 1181px\" \/><\/p>\n<p style=\"text-align: justify;\">\u201cNo buscamos compasi\u00f3n sino empat\u00eda y apoyo para investigar la enfermedad, que nuestros hijos se curen, o al menos tengan un tratamiento para mejorar su calidad de vida, y puedan vivir una vida normal como los dem\u00e1s\u201d, explica <strong>Patxi Vill\u00e9n<\/strong>, presidente de <a href=\"https:\/\/www.aefat.es\/\">Aefat<\/a>, la asociaci\u00f3n que agrupa a las familias en Espa\u00f1a y padre de Jon, uno de los j\u00f3venes que participar\u00e1 con el <strong>Equipo Zurich Aefat<\/strong> este domingo en el Zurich Marat\u00f3n San Sebasti\u00e1n\/<a href=\"https:\/\/zurichmaratonsansebastian.com\/\">Donostiako Maratoia<\/a>.<\/p>\n<p style=\"text-align: justify;\">Jon, al igual que sus compa\u00f1eros, necesita silla de ruedas desde los 8-10 a\u00f1os, como consecuencia de la <strong>ataxia telangiectasia<\/strong>, una enfermedad ultra rara, gen\u00e9tica, neurodegenerativa y multisist\u00e9mica que a\u00fan no tiene cura ni tratamiento, y que provoca una grave discapacidad f\u00edsica progresiva, inmunodeficiencia, complicaciones respiratorias, dificultad en el habla y una alta probabilidad de c\u00e1ncer.<\/p>\n<p style=\"text-align: justify;\">Jon, de Vitoria-Gasteiz, es uno de los <strong>40 ni\u00f1os y j\u00f3venes afectados en Espa\u00f1a<\/strong>. En el <a href=\"https:\/\/zurichmaratonsansebastian.com\/\">Zurich Marat\u00f3n San Sebasti\u00e1n<\/a> del domingo <strong>participar\u00e1n<\/strong> seis adem\u00e1s de \u00e9l, con edades comprendidas entre los 14 y los 19 a\u00f1os: Lola (Barcelona), los mellizos B\u00e1rbara y Adri\u00e1n (Burgos), \u00c1lex (Oliva, Valencia), \u00c1lvaro (Terrassa, Barcelona) y Sara (Madrid).<\/p>\n<p style=\"text-align: justify;\">Sus sillas especiales ser\u00e1n empujadas por<strong> 20 grandes corredores solidarios<\/strong> de \u00c1lava, Vizcaya, Huesca, Barcelona, Portugal y Reino Unido. El abanderado del equipo ser\u00e1 Abel Fern\u00e1ndez Mendivil, conocido como <strong>SpiderAbel<\/strong>, un corredor de Amurrio (\u00c1lava) que lleva cerca de 90 maratones enfundado en su traje de Spiderman y es fiel a la asociaci\u00f3n desde hace varios a\u00f1os. El equipo contar\u00e1 con otro corredor solidario \u201chonor\u00edfico\u201d, <strong>Gary Shaughnessy<\/strong>, director general de la Z Zurich Foundation, gran deportista y ejemplo de superaci\u00f3n que colabora con Aefat desde hace a\u00f1os y ya particip\u00f3 con el Equipo en la Zurich Marat\u00f3n de M\u00e1laga de 2019.<\/p>\n<h6>APOYO DE ZURICH DESDE 2017<\/h6>\n<p style=\"text-align: justify;\">El <strong>Equipo Zurich Aefat<\/strong>, creado en 2017 con el apoyo de la compa\u00f1\u00eda aseguradora, participa en las maratones que patrocina <a href=\"https:\/\/www.zurich.es\/\">Zurich<\/a> en Espa\u00f1a, actualmente las de Barcelona, Valencia, Madrid y Sevilla, adem\u00e1s de San Sebasti\u00e1n.<\/p>\n<p style=\"text-align: justify;\">Las maratones suponen una <strong>actividad inclusiva y motivadora<\/strong> para estos j\u00f3venes, una oportunidad para que sus familias compartan un fin de semana de convivencia, una forma de dar visibilidad a esta enfermedad infradiagnosticada y una buena ocasi\u00f3n para recaudar fondos y seguir financiando <a href=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2018\/09\/20\/investigacion\/\">proyectos de investigaci\u00f3n<\/a>.<\/p>\n<p style=\"text-align: justify;\">Por ello, animan a <strong>donar<\/strong> a todo el que quiera ayudar a las familias de Aefat a luchar por la investigaci\u00f3n de la ataxia telangiectasia en un reto especial para este marat\u00f3n creado en la plataforma <a href=\"https:\/\/www.migranodearena.org\/reto\/corremos-en-donostia-san-sebastian-por-la-ataxia-telangiectasia-nos-ayudas-\">Migranodearena<\/a>. Una oportunidad \u00fanica, ya que la <a href=\"https:\/\/www.zurich.foundation\/\">Z Zurich Foundation<\/a> promete donar a cada reto solidario de este domingo la mitad de lo recaudado.<\/p>\n<p style=\"text-align: justify;\"><strong>Patxi Vill\u00e9n<\/strong>, presidente de Aefat, ha destacado que \u201cesta actividad inclusiva y solidaria, que para algunos de nuestros chicos es su principal ilusi\u00f3n, la podemos vivir gracias a que tenemos m\u00e1s de cien corredores solidarios en distintas provincias que vienen a correr a las diferentes maratones y a convivir con nuestros hijos. Y por supuesto, gracias al apoyo extraordinario de <strong>Zurich<\/strong> a una asociaci\u00f3n peque\u00f1a como la nuestra. Adem\u00e1s, contamos la colaboraci\u00f3n de otras empresas como <strong><a href=\"https:\/\/www.mrw.es\/\">MRW<\/a><\/strong>, que traslada nuestras sillas y productos solidarios de marat\u00f3n en marat\u00f3n, y de <strong><a href=\"https:\/\/www.olarain.com\/\">Olarain<\/a><\/strong>, nuestro alojamiento siempre en San Sebasti\u00e1n, donde estamos muy c\u00f3modos y nos cuidan como si fu\u00e9ramos su familia. Adem\u00e1s, este a\u00f1o repetimos visita al <strong>Museo de la Ciencia\/<strong>Eureka! <a href=\"https:\/\/www.eurekamuseoa.eus\/es\/\">Zientzia Museoa<\/a><\/strong><\/strong>, de&nbsp;<strong>Kutxa Fundazioa, que nos encant\u00f3 el a\u00f1o pasado y colabora con nosotros<\/strong>\u201d.<\/p>\n<h6>PRESENTACI\u00d3N EL S\u00c1BADO 26 EN EXPO SPORTS<\/h6>\n<p style=\"text-align: justify;\">El Equipo Zurich Aefat se presentar\u00e1 este <strong>s\u00e1bado 26 de noviembre, a las 12:00 h<\/strong> en el stand de Zurich de la feria <strong>Expo Sports<\/strong> (Palacio de Congresos Kursaal). All\u00ed se fotografiar\u00e1n familias y corredores junto a&nbsp;directivos de la compa\u00f1\u00eda aseguradora.<\/p>\n<p style=\"text-align: justify;\">Una semana despu\u00e9s de San Sebasti\u00e1n, el Equipo Zurich Aefat participar\u00e1 en el <strong>Marat\u00f3n Valencia<\/strong> Trinidad Alfonso (4 de diciembre).<\/p>\n<p style=\"text-align: justify;\">Aefat es una asociaci\u00f3n sin \u00e1nimo de lucro creada en 2009 y declarada de <strong>utilidad p\u00fablica desde 2014<\/strong>. Pertenece a FEDER (Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras), FEDAES (Federaci\u00f3n de Ataxias de Espa\u00f1a) y a la internacional A-T Global Alliance (<a href=\"http:\/\/www.cureat.org\">www.cureat.org<\/a>).<\/p>\n<p><img decoding=\"async\" class=\" size-full wp-image-2474\" src=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/Equipo_Zurich_Aefat_en_Maraton_Donostia_2021_12.jpg\" alt=\"Equipo Zurich Aefat en Marat\u00f3n Donostia 2021 12\" width=\"1817\" height=\"1345\" srcset=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/Equipo_Zurich_Aefat_en_Maraton_Donostia_2021_12.jpg 1817w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/Equipo_Zurich_Aefat_en_Maraton_Donostia_2021_12-300x222.jpg 300w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/Equipo_Zurich_Aefat_en_Maraton_Donostia_2021_12-1024x758.jpg 1024w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/Equipo_Zurich_Aefat_en_Maraton_Donostia_2021_12-768x568.jpg 768w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/Equipo_Zurich_Aefat_en_Maraton_Donostia_2021_12-1536x1137.jpg 1536w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/Equipo_Zurich_Aefat_en_Maraton_Donostia_2021_12-16x12.jpg 16w\" sizes=\"(max-width: 1817px) 100vw, 1817px\" \/><\/p>\n<p><img decoding=\"async\" class=\" size-full wp-image-2473\" src=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/Equipo_Zurich_Aefat_en_Maraton_Donostia_2021_11.jpg\" alt=\"Equipo Zurich Aefat en Marat\u00f3n Donostia 2021 11\" width=\"1792\" height=\"1425\" srcset=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/Equipo_Zurich_Aefat_en_Maraton_Donostia_2021_11.jpg 1792w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/Equipo_Zurich_Aefat_en_Maraton_Donostia_2021_11-300x239.jpg 300w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/Equipo_Zurich_Aefat_en_Maraton_Donostia_2021_11-1024x814.jpg 1024w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/Equipo_Zurich_Aefat_en_Maraton_Donostia_2021_11-768x611.jpg 768w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/Equipo_Zurich_Aefat_en_Maraton_Donostia_2021_11-1536x1221.jpg 1536w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/Equipo_Zurich_Aefat_en_Maraton_Donostia_2021_11-15x12.jpg 15w\" sizes=\"(max-width: 1792px) 100vw, 1792px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p style=\"text-align: justify;\"><img fetchpriority=\"high\" decoding=\"async\" class=\" size-full wp-image-2439\" src=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/AEFAT_Zurich_Maraton_Donostia_Foto_Xavier_dArquer_5.jpg\" alt=\"AEFAT Zurich Marat\u00f3n Donostia san sebastian ataxia telangiectasia\" width=\"1181\" height=\"787\" style=\"display: block; margin-left: auto; margin-right: auto;\" srcset=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/AEFAT_Zurich_Maraton_Donostia_Foto_Xavier_dArquer_5.jpg 1181w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/AEFAT_Zurich_Maraton_Donostia_Foto_Xavier_dArquer_5-300x200.jpg 300w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/AEFAT_Zurich_Maraton_Donostia_Foto_Xavier_dArquer_5-1024x682.jpg 1024w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/AEFAT_Zurich_Maraton_Donostia_Foto_Xavier_dArquer_5-768x512.jpg 768w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/AEFAT_Zurich_Maraton_Donostia_Foto_Xavier_dArquer_5-18x12.jpg 18w\" sizes=\"(max-width: 1181px) 100vw, 1181px\" \/><\/p>\n<p style=\"text-align: justify;\">\u201cNo buscamos compasi\u00f3n sino empat\u00eda y apoyo para investigar la enfermedad, que nuestros hijos se curen, o al menos tengan un tratamiento para mejorar su calidad de vida, y puedan vivir una vida normal como los dem\u00e1s\u201d, explica <strong>Patxi Vill\u00e9n<\/strong>, presidente de <a href=\"https:\/\/www.aefat.es\/\">Aefat<\/a>, la asociaci\u00f3n que agrupa a las familias en Espa\u00f1a y padre de Jon, uno de los j\u00f3venes que participar\u00e1 con el <strong>Equipo Zurich Aefat<\/strong> este domingo en el Zurich Marat\u00f3n San Sebasti\u00e1n\/<a href=\"https:\/\/zurichmaratonsansebastian.com\/\">Donostiako Maratoia<\/a>.<\/p>\n","protected":false},"author":1,"featured_media":2439,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[807],"tags":[],"class_list":["post-2573","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-deporte-solidario"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Buscamos apoyo y visibilidad participando en el Zurich Marat\u00f3n de San Sebasti\u00e1n 2022 - 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=\"Buscamos apoyo y visibilidad participando en el Zurich Marat\u00f3n de San Sebasti\u00e1n 2022 - Aefat\" \/>\n<meta property=\"og:description\" content=\"\u201cNo buscamos compasi\u00f3n sino empat\u00eda y apoyo para investigar la enfermedad, que nuestros hijos se curen, o al menos tengan un tratamiento para mejorar su calidad de vida, y puedan vivir una vida normal como los dem\u00e1s\u201d, explica Patxi Vill\u00e9n, presidente de Aefat, la asociaci\u00f3n que agrupa a las familias en Espa\u00f1a y padre de Jon, uno de los j\u00f3venes que participar\u00e1 con el Equipo Zurich Aefat este domingo en el Zurich Marat\u00f3n San Sebasti\u00e1n\/Donostiako Maratoia.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/11\/23\/buscamos-apoyo-y-visibilidad-participando-en-el-zurich-maraton-de-san-sebastian-2022\/\" \/>\n<meta property=\"og:site_name\" content=\"Aefat\" \/>\n<meta property=\"article:published_time\" content=\"2022-11-23T19:22:22+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-03-02T12:00:51+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/AEFAT_Zurich_Maraton_Donostia_Foto_Xavier_dArquer_5.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1181\" \/>\n\t<meta property=\"og:image:height\" content=\"787\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"admin\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"admin\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data2\" content=\"4 minutos\" \/>\n<script type=\"application\/ld+json\" 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