{"id":2591,"date":"2022-12-07T13:22:15","date_gmt":"2022-12-07T13:22:15","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/12\/07\/sonia-patricia-media-maraton-memorial-adolfo-ros-volta-a-ria-ferrol\/"},"modified":"2026-03-02T12:00:51","modified_gmt":"2026-03-02T12:00:51","slug":"sonia-patricia-media-maraton-memorial-adolfo-ros-volta-a-ria-ferrol","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/12\/07\/sonia-patricia-media-maraton-memorial-adolfo-ros-volta-a-ria-ferrol\/","title":{"rendered":"Sonia y Patricia participar\u00e1n en la media marat\u00f3n XXXVI Memorial Adolfo Ros-Volta \u00e1 R\u00eda (Ferrol)"},"content":{"rendered":"<p><img fetchpriority=\"high\" decoding=\"async\" class=\" alignleft size-full wp-image-2590\" src=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria.jpg\" alt=\"Aefat media marat\u00f3n Volta a Ria\" width=\"462\" height=\"462\" style=\"margin: 10px; float: left;\" srcset=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria.jpg 2048w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria-300x300.jpg 300w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria-1024x1024.jpg 1024w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria-150x150.jpg 150w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria-768x768.jpg 768w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria-1536x1536.jpg 1536w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria-12x12.jpg 12w\" sizes=\"(max-width: 462px) 100vw, 462px\" \/>Sonia y Patricia, las dos \u00fanicas afectadas por <strong>ataxia telangiectasia<\/strong> en Galicia, participar\u00e1n en la pr\u00f3xima media marat\u00f3n <strong>XXXVI Memorial Adolfo Ros-Volta \u00e1 R\u00eda<\/strong>, que se celebrar\u00e1 este domingo a las 10 horas con salida en la localidad de Fene (comarca de Ferrol, A Coru\u00f1a). Con su participaci\u00f3n, pretenden poner el foco en esta enfermedad rara que a\u00fan no tiene cura ni tratamiento, y solicitar donaciones para su <a href=\"http:\/\/investigaci\u00f3n\">investigaci\u00f3n<\/a> en <a href=\"http:\/\/www.aefat.es\/dona\">www.aefat.es\/dona<\/a> o a trav\u00e9s del Bizum 01274.<\/p>\n<p><strong>Sonia<\/strong>, de Ferrol, tiene 20 a\u00f1os y <strong>Patricia<\/strong>, de Lal\u00edn, 31. Ambas van en silla de ruedas desde antes de su adolescencia por el efecto neurodegenerativo de la enfermedad. Son dos de los casi 40 casos que luchan en <a href=\"http:\/\/www.aefat.es\/\">Aefat<\/a>, la asociaci\u00f3n que agrupa a las familias con ni\u00f1os y j\u00f3venes afectados por ataxia telangiectasia (AT) en Espa\u00f1a.<\/p>\n<p>Las chicas gallegas ya participaron en esta media marat\u00f3n en 2019 y acuden asiduamente a grandes maratones con el <strong>Equipo Zurich Aefat<\/strong>, creado por la asociaci\u00f3n en 2017 con el apoyo de la compa\u00f1\u00eda aseguradora (maratones de Sevilla, Barcelona, Valencia y San Sebasti\u00e1n). Participar en las carreras constituye una actividad motivadora e inclusiva para los afectados, que permite normalizar su situaci\u00f3n, convivir con otras familias y, sobre todo, compartir una experiencia positiva con los corredores solidarios que empujan sus sillas.<\/p>\n<p>En este caso, el equipo de corredores ser\u00e1 coordinado por <strong>Hern\u00e1n Garc\u00eda<\/strong>, del Centro \u201cETP Encuentra tu potencial\u201d de coaching deportivo de Lal\u00edn, que ya ha colaborado con Aefat y las familias gallegas en anteriores ocasiones. Los <strong>19 corredores solidarios<\/strong> proceden de clubes de las zonas de las chicas gallegas, como \u00abPasa ou Entorna\u00bb, Noitebra y Atletismo Deza, y de equipos de corredores del Beni Gym Sport y el Centro ETP.<\/p>\n<p>La<strong> ataxia telangiectasia <\/strong>es una enfermedad ultra rara, gen\u00e9tica y neurodegenerativa que causa una grave discapacidad f\u00edsica progresiva, inmunodeficiencia, problemas respiratorios frecuentes y una mayor predisposici\u00f3n al c\u00e1ncer.&nbsp;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","protected":false},"excerpt":{"rendered":"<p><img fetchpriority=\"high\" decoding=\"async\" class=\" alignleft size-full wp-image-2590\" src=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria.jpg\" alt=\"Aefat media marat\u00f3n Volta a Ria\" width=\"462\" height=\"462\" style=\"margin: 10px; float: left;\" srcset=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria.jpg 2048w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria-300x300.jpg 300w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria-1024x1024.jpg 1024w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria-150x150.jpg 150w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria-768x768.jpg 768w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria-1536x1536.jpg 1536w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2022\/12\/Aefat_media_maraton_Volta_a_Ria-12x12.jpg 12w\" sizes=\"(max-width: 462px) 100vw, 462px\" \/>Sonia y Patricia, las dos \u00fanicas afectadas por <strong>ataxia telangiectasia<\/strong> en Galicia, participar\u00e1n en la pr\u00f3xima media marat\u00f3n <strong>XXXVI Memorial Adolfo Ros-Volta \u00e1 R\u00eda<\/strong>, que se celebrar\u00e1 este domingo a las 10 horas con salida en la localidad de Fene (comarca de Ferrol, A Coru\u00f1a). Con su participaci\u00f3n, pretenden poner el foco en esta enfermedad rara que a\u00fan no tiene cura ni tratamiento, y solicitar donaciones para su <a href=\"http:\/\/investigaci\u00f3n\">investigaci\u00f3n<\/a> en <a href=\"http:\/\/www.aefat.es\/dona\">www.aefat.es\/dona<\/a> o a trav\u00e9s del Bizum 01274.<\/p>\n<p><strong>Sonia<\/strong>, de Ferrol, tiene 20 a\u00f1os y <strong>Patricia<\/strong>, de Lal\u00edn, 31. Ambas van en silla de ruedas desde antes de su adolescencia por el efecto neurodegenerativo de la enfermedad. Son dos de los casi 40 casos que luchan en <a href=\"http:\/\/www.aefat.es\/\">Aefat<\/a>, la asociaci\u00f3n que agrupa a las familias con ni\u00f1os y j\u00f3venes afectados por ataxia telangiectasia (AT) en Espa\u00f1a.<\/p>\n","protected":false},"author":1,"featured_media":2590,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[807],"tags":[290,60,55,131,62,313,226,221,328,327,70,69,355],"class_list":["post-2591","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-deporte-solidario","tag-a-coruna","tag-aefat","tag-ataxia-telangiectasia","tag-eitb","tag-enfermedades-raras","tag-ferrol","tag-festival-aitzina-folk","tag-lalin","tag-media-maraton","tag-pontevedra","tag-runner","tag-running","tag-running-solidario"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Sonia y Patricia participar\u00e1n en la media marat\u00f3n XXXVI Memorial Adolfo Ros-Volta \u00e1 R\u00eda (Ferrol) - 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=\"Sonia y Patricia participar\u00e1n en la media marat\u00f3n XXXVI Memorial Adolfo Ros-Volta \u00e1 R\u00eda (Ferrol) - Aefat\" \/>\n<meta property=\"og:description\" content=\"Sonia y Patricia, las dos \u00fanicas afectadas por ataxia telangiectasia en Galicia, participar\u00e1n en la pr\u00f3xima media marat\u00f3n XXXVI Memorial Adolfo Ros-Volta \u00e1 R\u00eda, que se celebrar\u00e1 este domingo a las 10 horas con salida en la localidad de Fene (comarca de Ferrol, A Coru\u00f1a). Con su participaci\u00f3n, pretenden poner el foco en esta enfermedad rara que a\u00fan no tiene cura ni tratamiento, y solicitar donaciones para su investigaci\u00f3n en www.aefat.es\/dona o a trav\u00e9s del Bizum 01274. Sonia, de Ferrol, tiene 20 a\u00f1os y Patricia, de Lal\u00edn, 31. Ambas van en silla de ruedas desde antes de su adolescencia por el efecto neurodegenerativo de la enfermedad. 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Con su participaci\u00f3n, pretenden poner el foco en esta enfermedad rara que a\u00fan no tiene cura ni tratamiento, y solicitar donaciones para su investigaci\u00f3n en www.aefat.es\/dona o a trav\u00e9s del Bizum 01274. Sonia, de Ferrol, tiene 20 a\u00f1os y Patricia, de Lal\u00edn, 31. Ambas van en silla de ruedas desde antes de su adolescencia por el efecto neurodegenerativo de la enfermedad. 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