{"id":2531,"date":"2022-05-05T17:38:19","date_gmt":"2022-05-05T17:38:19","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/05\/05\/regresamos-a-la-zurich-marato-barcelona-8-mayo-2022\/"},"modified":"2026-03-02T12:01:04","modified_gmt":"2026-03-02T12:01:04","slug":"regresamos-a-la-zurich-marato-barcelona-8-mayo-2022","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/05\/05\/regresamos-a-la-zurich-marato-barcelona-8-mayo-2022\/","title":{"rendered":"\u00a1Regresamos a la Zurich Marat\u00f3 Barcelona! 8 mayo 2022"},"content":{"rendered":"<p style=\"text-align: justify;\"><img fetchpriority=\"high\" decoding=\"async\" class=\" size-full wp-image-2446\" src=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/EQUIPO_ZURICH_AEFAT_en_Marato_Barcelona_2021_salto_-Foto_Xavier_dArquer.jpg\" alt=\"EQUIPO ZURICH AEFAT en Marat\u00f3 Barcelona 2021 salto Foto Xavier dArquer\" width=\"1772\" height=\"1181\" srcset=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/EQUIPO_ZURICH_AEFAT_en_Marato_Barcelona_2021_salto_-Foto_Xavier_dArquer.jpg 1772w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/EQUIPO_ZURICH_AEFAT_en_Marato_Barcelona_2021_salto_-Foto_Xavier_dArquer-300x200.jpg 300w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/EQUIPO_ZURICH_AEFAT_en_Marato_Barcelona_2021_salto_-Foto_Xavier_dArquer-1024x682.jpg 1024w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/EQUIPO_ZURICH_AEFAT_en_Marato_Barcelona_2021_salto_-Foto_Xavier_dArquer-768x512.jpg 768w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/EQUIPO_ZURICH_AEFAT_en_Marato_Barcelona_2021_salto_-Foto_Xavier_dArquer-1536x1024.jpg 1536w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/EQUIPO_ZURICH_AEFAT_en_Marato_Barcelona_2021_salto_-Foto_Xavier_dArquer-18x12.jpg 18w\" sizes=\"(max-width: 1772px) 100vw, 1772px\" \/><\/p>\n<p style=\"text-align: justify;\">\u00a1Volvemos a Barcelona! Dar <strong>visibilidad<\/strong> a la ataxia telangiectasia y disfrutar de una <strong>experiencia motivadora<\/strong> para los ni\u00f1os y j\u00f3venes afectados por esta enfermedad rara, son los principales objetivos de nuestro Equipo Zurich Aefat, que participar\u00e1 de nuevo en la <a href=\"https:\/\/www.zurichmaratobarcelona.es\/\">Zurich Marat\u00f3 de Barcelona<\/a> este domingo 8 de mayo.&nbsp;Y tambi\u00e9n <strong>recaudar fondos<\/strong> para la investigaci\u00f3n de esta enfermedad gen\u00e9tica y neurodegenerativa que obliga a los ni\u00f1os a usar silla de ruedas hacia los diez a\u00f1os, provoca inmunodeficiencia y numerosas complicaciones, incluyendo m\u00e1s probabilidad de c\u00e1ncer.<\/p>\n<p style=\"text-align: justify;\">\u201cComo no hay investigaci\u00f3n p\u00fablica, nuestra esperanza en encontrar una cura se nutre de las donaciones privadas de empresas y particulares\u201d, explica Patxi Vill\u00e9n, padre de Jon, uno de los afectados, y presidente de Aefat, nuestra asociaci\u00f3n, que agrupa a las familias con ni\u00f1os y j\u00f3venes con ataxia telangiectasia en Espa\u00f1a. Por ello, tambi\u00e9n tenemos abierta una recaudaci\u00f3n de fondos a trav\u00e9s de la plataforma <a href=\"https:\/\/www.migranodearena.org\/reto\/equipo-zurich-aefat-por-la-ataxia-telangiectasia\">Migranodearena<\/a>, destinados a la financiaci\u00f3n de diferentes <a href=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2018\/09\/20\/investigacion\/\">proyectos de investigaci\u00f3n<\/a>. El m\u00e1s reciente es de terapia g\u00e9nica, desarrollado por <strong>CIMA-Cl\u00ednica Universidad de Navarra<\/strong> en colaboraci\u00f3n con la <strong>Universitat Pompeu Fabra<\/strong> (UPF).<\/p>\n<p style=\"text-align: justify;\">El Equipo Zurich Aefat estar\u00e1 formado este domingo por <strong>ocho j\u00f3venes<\/strong> afectados por ataxia telangiectasia, y un grupo de <strong>20 corredores solidarios<\/strong> que empujar\u00e1n sus sillas especiales por las calles de Barcelona durante los 42 km de la marat\u00f3n. Los ocho participantes en silla, con edades de entre 14 y poco m\u00e1s de 30 a\u00f1os, son Lola e Iman (de Barcelona), los hermanos \u00c1lvaro, Alejandra y Luis-Ill\u00e1n (Terrassa, Barcelona), \u00c1lex (Oliva, Valencia), Sonia (Ferrol, A Coru\u00f1a) y Patricia (Lal\u00edn, Pontevedra).<\/p>\n<p style=\"text-align: justify;\">El Equipo, creado por Aefat y <strong>apoyado por <a href=\"https:\/\/www.zurich.es\/\">Zurich Seguros<\/a> desde 2017<\/strong>, ha servido para mucho m\u00e1s que participar en las maratones que patrocina la empresa aseguradora en Espa\u00f1a. \u201cGracias al Equipo, las familias y afectados conviven un fin de semana, hacen vida con los corredores solidarios, comparten experiencias, se apoyan, normalizan su situaci\u00f3n\u2026 Adem\u00e1s, intentamos que se conozca la enfermedad porque muchas veces est\u00e1 infradiagnosticada\u201d, se\u00f1ala el presidente de Aefat.<\/p>\n<p style=\"text-align: justify;\">Entre los <strong>corredores<\/strong> para la Marat\u00f3, catalanes, aragoneses y vascos, la mayor\u00eda son \u201crepetidores\u201d. SpiderAbel, corredor de Amurrio (\u00c1lava) que lleva m\u00e1s de 80 maratones enfundado en su traje de Spiderman, es el abanderado del equipo. Otros han acompa\u00f1ado a los chicos en muchas de las maratones Zurich que lleva el grupo, y siempre hay alguna nueva incorporaci\u00f3n que quiere vivir el marat\u00f3n de una forma solidaria e inclusiva. En sus camisetas azules lucir\u00e1n el lema \u201c<strong>Corre, frena la AT<\/strong>\u201d de Aefat.<\/p>\n<p style=\"text-align: justify;\">El Equipo Zurich Aefat se presentar\u00e1 este <strong>viernes 6 de mayo, a las 19,00 h<\/strong> en el stand de Zurich de la feria <strong>Expo Sports<\/strong> (Pabell\u00f3n 7 de Fira de Barcelona en Montju\u00efc, junto a las columnas Puig i Cadafalch). 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;\">Colocaremos un <strong>stand para vender camisetas y productos solidarios<\/strong> ese mismo s\u00e1bado 7 de mayo en el vest\u00edbulo del Ayre Hotel Gran V\u00eda, donde se alojan las familias. \u201cQue te toque una enfermedad rara es una loter\u00eda que nadie quiere _recuerda Patxi Vill\u00e9n_. Pero si no luchamos nosotros, no lucha nadie. Y este Equipo, este gran proyecto inclusivo, se puede desarrollar gracias al apoyo incondicional de Zurich desde hace seis a\u00f1os y la colaboraci\u00f3n de otras empresas como Ayre Hoteles en el alojamiento, MRW para transportar nuestras sillas, la organizaci\u00f3n de la Marat\u00f3 y tambi\u00e9n al Museu de la Xocolata, donde iremos de visita el s\u00e1bado por la ma\u00f1ana. Y gracias a los corredores solidarios, que son las piernas de nuestros hijos\u201d.<\/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>, que est\u00e1 formada por familiares y personas relacionadas con afectados de ataxia telangiectasia de diferentes puntos de Espa\u00f1a. La asociaci\u00f3n pertenece a FEDER (Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras), FEDAES (Federaci\u00f3n de Ataxias de Espa\u00f1a) y la internacional A-T Global Alliance (<a href=\"http:\/\/www.cureat.org\/\">www.cureat.org<\/a>).<\/p>\n","protected":false},"excerpt":{"rendered":"<p style=\"text-align: justify;\"><img fetchpriority=\"high\" decoding=\"async\" class=\" size-full wp-image-2446\" src=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/EQUIPO_ZURICH_AEFAT_en_Marato_Barcelona_2021_salto_-Foto_Xavier_dArquer.jpg\" alt=\"EQUIPO ZURICH AEFAT en Marat\u00f3 Barcelona 2021 salto Foto Xavier dArquer\" width=\"1772\" height=\"1181\" srcset=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/EQUIPO_ZURICH_AEFAT_en_Marato_Barcelona_2021_salto_-Foto_Xavier_dArquer.jpg 1772w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/EQUIPO_ZURICH_AEFAT_en_Marato_Barcelona_2021_salto_-Foto_Xavier_dArquer-300x200.jpg 300w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/EQUIPO_ZURICH_AEFAT_en_Marato_Barcelona_2021_salto_-Foto_Xavier_dArquer-1024x682.jpg 1024w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/EQUIPO_ZURICH_AEFAT_en_Marato_Barcelona_2021_salto_-Foto_Xavier_dArquer-768x512.jpg 768w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/EQUIPO_ZURICH_AEFAT_en_Marato_Barcelona_2021_salto_-Foto_Xavier_dArquer-1536x1024.jpg 1536w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/EQUIPO_ZURICH_AEFAT_en_Marato_Barcelona_2021_salto_-Foto_Xavier_dArquer-18x12.jpg 18w\" sizes=\"(max-width: 1772px) 100vw, 1772px\" \/><\/p>\n<p style=\"text-align: justify;\">\u00a1Volvemos a Barcelona! Dar <strong>visibilidad<\/strong> a la ataxia telangiectasia y disfrutar de una <strong>experiencia motivadora<\/strong> para los ni\u00f1os y j\u00f3venes afectados por esta enfermedad rara, son los principales objetivos de nuestro Equipo Zurich Aefat, que participar\u00e1 de nuevo en la <a href=\"https:\/\/www.zurichmaratobarcelona.es\/\">Zurich Marat\u00f3 de Barcelona<\/a> este domingo 8 de mayo.&nbsp;Y tambi\u00e9n <strong>recaudar fondos<\/strong> para la investigaci\u00f3n de esta enfermedad gen\u00e9tica y neurodegenerativa que obliga a los ni\u00f1os a usar silla de ruedas hacia los diez a\u00f1os, provoca inmunodeficiencia y numerosas complicaciones, incluyendo m\u00e1s probabilidad de c\u00e1ncer.<\/p>\n","protected":false},"author":1,"featured_media":2446,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[807],"tags":[228,185,126],"class_list":["post-2531","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-deporte-solidario","tag-la-opinion-de-murcia","tag-murcia","tag-tapones-solidarios"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>\u00a1Regresamos a la Zurich Marat\u00f3 Barcelona! 8 mayo 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=\"\u00a1Regresamos a la Zurich Marat\u00f3 Barcelona! 8 mayo 2022 - Aefat\" \/>\n<meta property=\"og:description\" content=\"\u00a1Volvemos a Barcelona! Dar visibilidad a la ataxia telangiectasia y disfrutar de una experiencia motivadora para los ni\u00f1os y j\u00f3venes afectados por esta enfermedad rara, son los principales objetivos de nuestro Equipo Zurich Aefat, que participar\u00e1 de nuevo en la Zurich Marat\u00f3 de Barcelona este domingo 8 de mayo.&nbsp;Y tambi\u00e9n recaudar fondos para la investigaci\u00f3n de esta enfermedad gen\u00e9tica y neurodegenerativa que obliga a los ni\u00f1os a usar silla de ruedas hacia los diez a\u00f1os, provoca inmunodeficiencia y numerosas complicaciones, incluyendo m\u00e1s probabilidad de c\u00e1ncer.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/05\/05\/regresamos-a-la-zurich-marato-barcelona-8-mayo-2022\/\" \/>\n<meta property=\"og:site_name\" content=\"Aefat\" \/>\n<meta property=\"article:published_time\" content=\"2022-05-05T17:38:19+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-03-02T12:01:04+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/11\/EQUIPO_ZURICH_AEFAT_en_Marato_Barcelona_2021_salto_-Foto_Xavier_dArquer-1024x682.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1024\" \/>\n\t<meta property=\"og:image:height\" content=\"682\" \/>\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\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/05\/05\/regresamos-a-la-zurich-marato-barcelona-8-mayo-2022\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/05\/05\/regresamos-a-la-zurich-marato-barcelona-8-mayo-2022\/\"},\"author\":{\"name\":\"admin\",\"@id\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/#\/schema\/person\/d75277649f873b670821832f92709a5f\"},\"headline\":\"\u00a1Regresamos a la Zurich Marat\u00f3 Barcelona! 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