{"id":2197,"date":"2019-11-19T12:04:59","date_gmt":"2019-11-19T12:04:59","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2019\/11\/19\/video-solidario-apoyar-investigacion-ataxia-telangiectasia\/"},"modified":"2026-03-02T12:01:50","modified_gmt":"2026-03-02T12:01:50","slug":"video-solidario-apoyar-investigacion-ataxia-telangiectasia","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2019\/11\/19\/video-solidario-apoyar-investigacion-ataxia-telangiectasia\/","title":{"rendered":"Un v\u00eddeo solidario para apoyar la investigaci\u00f3n de la ataxia telangiectasia"},"content":{"rendered":"<p style=\"text-align: justify;\">&nbsp;{source}<span style=\"font-family: courier new, courier, monospace;\">&lt;iframe width=\u00bb560&#8243; height=\u00bb315&#8243; src=\u00bbhttps:\/\/www.youtube.com\/embed\/Styff3VaOP0&#8243; frameborder=\u00bb0&#8243; allow=\u00bbaccelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture\u00bb allowfullscreen&gt;&lt;\/iframe&gt;<\/span>{\/source}<\/p>\n<p style=\"text-align: justify;\">M\u00e1s de 60 personas, entre ni\u00f1os y j\u00f3venes afectados, familiares, corredores solidarios y voluntarios han colaborado para crear <a href=\"https:\/\/youtu.be\/Styff3VaOP0\">este v\u00eddeo<\/a> de tres minutos que busca apoyar la investigaci\u00f3n de la ataxia telangiectasia, una enfermedad rara, muy discapacitante y neurodegenerativa que afecta a unas 30 familias en todo el Estado. Todos los participantes del v\u00eddeo han formado parte de la historia del <strong>Equipo Zurich Aefat<\/strong>, creado en 2017 para participar en las cuatro grandes maratones que la compa\u00f1\u00eda aseguradora patrocina en Espa\u00f1a: Donostia\/San Sebasti\u00e1n, M\u00e1laga, Sevilla y Barcelona.<\/p>\n<p>&nbsp;<\/p>\n<p style=\"text-align: justify;\">De hecho, el <strong><span style=\"text-decoration: underline;\"><a href=\"https:\/\/www.aefat.es\/index.php\/actividades-solidarias\/equipo-zurich-at\"><strong>Equipo Zurich Aefat<\/strong><\/a><\/span><\/strong> participar\u00e1 en el <strong><a href=\"http:\/\/www.zurichmaratondonostia.com\/\">Zurich Marat\u00f3n Donostia\/San Sebasti\u00e1n<\/a> <\/strong>del pr\u00f3ximo domingo 24 de noviembre. En esta ocasi\u00f3n los representantes ser\u00e1n <strong>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<p>Como explica <strong>Patxi Vill\u00e9n, presidente de <a href=\"https:\/\/www.aefat.es\/\">Aefat<\/a><\/strong>, asociaci\u00f3n que organiza este reto deportivo solidario, y que agrupa a las familias afectadas por ataxia telangiectasia en Espa\u00f1a, \u201cel v\u00eddeo est\u00e1 hecho con trocitos de muchos de los que nos apoyan, con cari\u00f1o, para explicar que las maratones sirven para motivar a nuestros hijos, defender la inclusi\u00f3n, hacer que se conozca m\u00e1s esta enfermedad infradiagnosticada, y luchar por buscar una cura\u201d.<\/p>\n<p style=\"text-align: justify;\">En el v\u00eddeo, Aefat busca la solidaridad de la sociedad para financiar un <strong>proyecto de investigaci\u00f3n<\/strong> en la <a href=\"https:\/\/www.cun.es\/actualidad\/noticias\/clinica-universidad-navarra-inicia-proyecto-investigacion-tratamiento-ataxia-telangiectasia\">Cl\u00ednica Universidad de Navarra<\/a> que cuesta 150.000 euros y que podr\u00eda dar con una terapia para <strong>frenar el avance de la ataxia telangiectasia.<\/strong> La asociaci\u00f3n de familias ha abierto un reto en la plataforma <a href=\"https:\/\/www.migranodearena.org\/reto\/19043\/reto-equipo-zurich-aefat-corre-frena-la-ataxia-telangiectasia-zurich-maraton-donostia-y-malaga-2019\">Migranodearena<\/a> para que cualquier persona pueda colaborar f\u00e1cilmente en el avance de la investigaci\u00f3n. <a href=\"https:\/\/www.zurich.es\/es-es\/seguros?&amp;WT.mc_id=z_bg_b2b_se_GOOGLE_Global_B2C_N\/A%7CB%26G-B-EXA-ES-ES_2016_N\/A_N\/A_N\/A_All-Platforms_Mixed_Text_Search_N\/A_Google_BR-Exact-ES_zurich&amp;WT.srch=1&amp;gclid=CjwKCAiA5qTfBRAoEiwAwQy-6aJcYoJd7zCJ7_KRhOZer_Cd2LoaUQwz4trlJZ2fH2JDHvUXgZzwmRoCFgUQAvD_BwE\"><strong>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<p style=\"text-align: justify;\">Los corredores solidarios llevar\u00e1n de nuevo la camiseta con el lema \u00abCorre, frena la AT\u00bb&nbsp;y el \u201cImparables\u201d de Zurich. Aefat cuenta con m\u00e1s colaboradores solidarios.&nbsp;<strong><a href=\"http:\/\/www.olarain.com\/\">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 <strong><a href=\"https:\/\/www.mrw.es\/\">MRW<\/a><\/strong>, que ayuda al traslado de las sillas especiales y, por supuesto, la <strong>organizaci\u00f3n del marat\u00f3n<\/strong> que colabora activamente en la participaci\u00f3n del Equipo Zurich AT.<\/p>\n","protected":false},"excerpt":{"rendered":"<p style=\"text-align: justify;\">&nbsp;{source}<span style=\"font-family: courier new, courier, monospace;\">&lt;iframe width=\u00bb560&#8243; height=\u00bb315&#8243; src=\u00bbhttps:\/\/www.youtube.com\/embed\/Styff3VaOP0&#8243; frameborder=\u00bb0&#8243; allow=\u00bbaccelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture\u00bb allowfullscreen&gt;&lt;\/iframe&gt;<\/span>{\/source}<\/p>\n<p style=\"text-align: justify;\">M\u00e1s de 60 personas, entre ni\u00f1os y j\u00f3venes afectados, familiares, corredores solidarios y voluntarios han colaborado para crear <a href=\"https:\/\/youtu.be\/Styff3VaOP0\">este v\u00eddeo<\/a> de tres minutos que busca apoyar la investigaci\u00f3n de la ataxia telangiectasia, una enfermedad rara, muy discapacitante y neurodegenerativa que afecta a unas 30 familias en todo el Estado. Todos los participantes del v\u00eddeo han formado parte de la historia del <strong>Equipo Zurich Aefat<\/strong>, creado en 2017 para participar en las cuatro grandes maratones que la compa\u00f1\u00eda aseguradora patrocina en Espa\u00f1a: Donostia\/San Sebasti\u00e1n, M\u00e1laga, Sevilla y Barcelona.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[808],"tags":[60,55,321,322,62,319,320,64,182,323,183,318,282],"class_list":["post-2197","post","type-post","status-publish","format-standard","hentry","category-divulgacion-y-medios","tag-aefat","tag-ataxia-telangiectasia","tag-correfrena-la-at","tag-correrfrenalaat","tag-enfermedades-raras","tag-equipo-zurich-aefat","tag-imparables","tag-maraton","tag-portal-local","tag-rare-disease","tag-sara","tag-video","tag-zurich"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Un v\u00eddeo solidario para apoyar la investigaci\u00f3n de la ataxia telangiectasia - 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=\"Un v\u00eddeo solidario para apoyar la investigaci\u00f3n de la ataxia telangiectasia - Aefat\" \/>\n<meta property=\"og:description\" content=\"&nbsp;{source}&lt;iframe width=&quot;560&quot; height=&quot;315&quot; src=&quot;https:\/\/www.youtube.com\/embed\/Styff3VaOP0&quot; frameborder=&quot;0&quot; allow=&quot;accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture&quot; allowfullscreen&gt;&lt;\/iframe&gt;{\/source} M\u00e1s de 60 personas, entre ni\u00f1os y j\u00f3venes afectados, familiares, corredores solidarios y voluntarios han colaborado para crear este v\u00eddeo de tres minutos que busca apoyar la investigaci\u00f3n de la ataxia telangiectasia, una enfermedad rara, muy discapacitante y neurodegenerativa que afecta a unas 30 familias en todo el Estado. Todos los participantes del v\u00eddeo han formado parte de la historia del Equipo Zurich Aefat, creado en 2017 para participar en las cuatro grandes maratones que la compa\u00f1\u00eda aseguradora patrocina en Espa\u00f1a: Donostia\/San Sebasti\u00e1n, M\u00e1laga, Sevilla y Barcelona.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2019\/11\/19\/video-solidario-apoyar-investigacion-ataxia-telangiectasia\/\" \/>\n<meta property=\"og:site_name\" content=\"Aefat\" \/>\n<meta property=\"article:published_time\" content=\"2019-11-19T12:04:59+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-03-02T12:01:50+00:00\" \/>\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=\"3 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\/2019\/11\/19\/video-solidario-apoyar-investigacion-ataxia-telangiectasia\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2019\/11\/19\/video-solidario-apoyar-investigacion-ataxia-telangiectasia\/\"},\"author\":{\"name\":\"admin\",\"@id\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/#\/schema\/person\/d75277649f873b670821832f92709a5f\"},\"headline\":\"Un v\u00eddeo solidario para apoyar la investigaci\u00f3n de la ataxia telangiectasia\",\"datePublished\":\"2019-11-19T12:04:59+00:00\",\"dateModified\":\"2026-03-02T12:01:50+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2019\/11\/19\/video-solidario-apoyar-investigacion-ataxia-telangiectasia\/\"},\"wordCount\":527,\"publisher\":{\"@id\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/#organization\"},\"keywords\":[\"aefat\",\"ataxia telangiectasia\",\"correfrena la at\",\"correrfrenalaat\",\"enfermedades raras\",\"Equipo Zurich AEFAT\",\"imparables\",\"marat\u00f3n\",\"Portal Local\",\"rare disease\",\"Sara\",\"v\u00eddeo\",\"Zurich\"],\"articleSection\":[\"Divulgaci\u00f3n y medios\"],\"inLanguage\":\"es\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2019\/11\/19\/video-solidario-apoyar-investigacion-ataxia-telangiectasia\/\",\"url\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2019\/11\/19\/video-solidario-apoyar-investigacion-ataxia-telangiectasia\/\",\"name\":\"Un v\u00eddeo solidario para apoyar la investigaci\u00f3n de la ataxia telangiectasia - 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