{"id":2940,"date":"2024-12-02T19:10:17","date_gmt":"2024-12-02T19:10:17","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2024\/12\/02\/completado-memorial-adolfo-ros-2024\/"},"modified":"2026-03-03T11:33:25","modified_gmt":"2026-03-03T11:33:25","slug":"completado-memorial-adolfo-ros-2024","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2024\/12\/02\/completado-memorial-adolfo-ros-2024\/","title":{"rendered":"Participamos en el Memorial Adolfo Ros-Volta \u00e1 R\u00eda 2024"},"content":{"rendered":"

\"Equipo_Aefat_en_Memorial_Adolfo_Ros_2024_meta.jpg\"<\/p>\n

La XXXVIII Memorial Adolfo Ros-Volta \u00e1 R\u00eda<\/strong>, celebrada el pasado domingo, volvi\u00f3 a dejar un recuerdo imborrable en Sonia y Patricia, dos j\u00f3venes gallegas con ataxia telangiectasia<\/strong> que participaron en esta media marat\u00f3n con salida y meta en Nar\u00f3n (A Coru\u00f1a).<\/p>\n

Sus sillas fueron empujadas durante esos 21 kil\u00f3metros por un grupo de m\u00e1s de 25 corredores solidarios gallegos, que se prestaron a colaborar para motivar a estas chicas en su lucha diaria con esta condici\u00f3n altamente incapacitante, y comprometidos con dar a conocer esta enfermedad infradiagnosticada.<\/p>\n

Patricia<\/strong>, de Lal\u00edn (Pontevedra), quiso dar las gracias a los corredores solidarios \u201cpor vivir esta experiencia tan bonita, un d\u00eda tan emocionante\u201d. Sonia<\/strong>, de Ferrol (A Coru\u00f1a), confes\u00f3 que se emociona mucho, \u201csobre todo cuando llego a la meta\u201d. Carla<\/strong>, la tercera afectada gallega localizada con esta enfermedad, de Pontevedra, asisti\u00f3 tambi\u00e9n al evento deportivo para animar a sus compa\u00f1eras y agradeci\u00f3 al equipo su implicaci\u00f3n. \u201cAparte de dar visibilidad a nuestra enfermedad, es una bonita forma de reencontrarte con amigos y amigas, y pasarlo bien\u201d.<\/p>\n

Los corredores y corredoras solidarios<\/strong> proced\u00edan de clubes o equipos de corredores de las zonas donde residen las chicas gallegas, como Pasa ou Entorna, la Escuela de Especialidades de la Armada \u201cAntonio de Esca\u00f1o\u201d, la Escuela de Especialidades de la Estaci\u00f3n Naval de La Gra\u00f1a (ESENGRA), el Club de Atletismo Deza, Opa Ferrol Team Running, y la Junta de Deportes de la Armada. Fran Rivera, <\/strong>corredor solidario que coordin\u00f3 al equipo en la carrera, explic\u00f3 que \u201cha sido una experiencia de 10, un placer apoyar a las chicas y compartir este rato con todos\u201d.<\/p>\n

La ataxia telangiectasia, enfermedad ultra rara, gen\u00e9tica y neurodegenerativa, sin cura ni tratamiento hasta el momento, cuenta con solo estas tres afectadas en Galicia, y unos 40 ni\u00f1os y j\u00f3venes en Espa\u00f1a<\/strong>, agrupados en la asociaci\u00f3n  Aefat<\/a>.<\/p>\n

Mariv\u00ed V\u00e1zquez<\/strong>, madre de Sonia y secretaria de Aefat, agradeci\u00f3 la cesi\u00f3n de las dos sillas de marat\u00f3n a la Fundaci\u00f3n Enki<\/a>, que lucha por la inclusi\u00f3n en el deporte. \u201cMi agradecimiento tambi\u00e9n es para los ayuntamientos organizadores de la carrera, que facilitan nuestra participaci\u00f3n, y para todos los maravillosos corredores solidarios que empujan sus sillas, por darnos la posibilidad de que las chicas disfruten, y a la vez dar visibilidad a la ataxia telangiectasia. Para ellas es una haza\u00f1a que no ser\u00eda posible sin su implicaci\u00f3n. Nos llena de emoci\u00f3n ver a las chicas completar los 21 km, y saber que lo hacen en honor a Adolfo Ros lo hace especial\u201d.<\/p>\n

Esta es la cuarta ocasi\u00f3n en la que Sonia y Patricia participan en esta media marat\u00f3n hist\u00f3rica, aunque acuden asiduamente a grandes maratones con el Equipo Zurich Aefat<\/strong>, creado por la asociaci\u00f3n en 2017 con el apoyo de la compa\u00f1\u00eda aseguradora (participa en las maratones de Sevilla, Barcelona, Madrid, Valencia y San Sebasti\u00e1n). El Equipo ha recibido este mes dos premios<\/a> a nivel nacional por este proyecto de deporte inclusivo (historia en este v\u00eddeo<\/a>).<\/p>\n

Aefat es una asociaci\u00f3n sin \u00e1nimo de lucro creada en 2009 y declarada de utilidad p\u00fablica desde 2014<\/strong>. Pertenece a FEDER (Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras) y es fundadora de la internacional A-T Global Alliance (www.cureat.org<\/a>). Todo aquel que quiera donar para financiar los proyectos de investigaci\u00f3n<\/a><\/strong>, pueden hacerlo a trav\u00e9s de la web www.aefat.es\/dona<\/a> o por Bizum al n\u00famero 01274.<\/p>\n

\"Equipo_Aefat_en_Memorial_Adolfo_Ros_2024_4.jpg\"\"Equipo_Aefat_en_Memorial_Adolfo_Ros_2024_6.jpg\"\"Equipo_Aefat_en_Memorial_Adolfo_Ros_2024_5.jpg\"\"Equipo_Aefat_en_Memorial_Adolfo_Ros_2024_1.jpg\"\"Equipo_Aefat_en_Memorial_Adolfo_Ros_2024_3.jpg\"\"Equipo_Aefat_en_Memorial_Adolfo_Ros_2024_2.jpg\"<\/p>\n

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

\"Equipo_Aefat_en_Memorial_Adolfo_Ros_2024_meta.jpg\"<\/p>\n

La XXXVIII Memorial Adolfo Ros-Volta \u00e1 R\u00eda<\/strong>, celebrada el pasado domingo, volvi\u00f3 a dejar un recuerdo imborrable en Sonia y Patricia, dos j\u00f3venes gallegas con ataxia telangiectasia<\/strong> que participaron en esta media marat\u00f3n con salida y meta en Nar\u00f3n (A Coru\u00f1a).<\/p>\n

Sus sillas fueron empujadas durante esos 21 kil\u00f3metros por un grupo de m\u00e1s de 25 corredores solidarios gallegos, que se prestaron a colaborar para motivar a estas chicas en su lucha diaria con esta condici\u00f3n altamente incapacitante, y comprometidos con dar a conocer esta enfermedad infradiagnosticada.<\/p>\n

Patricia<\/strong>, de Lal\u00edn (Pontevedra), quiso dar las gracias a los corredores solidarios \u201cpor vivir esta experiencia tan bonita, un d\u00eda tan emocionante\u201d. Sonia<\/strong>, de Ferrol (A Coru\u00f1a), confes\u00f3 que se emociona mucho, \u201csobre todo cuando llego a la meta\u201d. Carla<\/strong>, la tercera afectada gallega localizada con esta enfermedad, de Pontevedra, asisti\u00f3 tambi\u00e9n al evento deportivo para animar a sus compa\u00f1eras y agradeci\u00f3 al equipo su implicaci\u00f3n. \u201cAparte de dar visibilidad a nuestra enfermedad, es una bonita forma de reencontrarte con amigos y amigas, y pasarlo bien\u201d.<\/p>\n","protected":false},"author":1,"featured_media":2933,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[51],"tags":[60,55,761,459,313,221,326,398,69,399],"class_list":["post-2940","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actividades-solidarias","tag-aefat","tag-ataxia-telangiectasia","tag-carla","tag-corredores-solidarios","tag-ferrol","tag-lalin","tag-memorial-adolfo-ros-volta-a-ria","tag-patricia","tag-running","tag-sonia"],"acf":[],"yoast_head":"\nParticipamos en el Memorial Adolfo Ros-Volta \u00e1 R\u00eda 2024 - 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 Memorial Adolfo Ros-Volta \u00e1 R\u00eda 2024 - Aefat\" \/>\n<meta property=\"og:description\" content=\"La XXXVIII Memorial Adolfo Ros-Volta \u00e1 R\u00eda, celebrada el pasado domingo, volvi\u00f3 a dejar un recuerdo imborrable en Sonia y Patricia, dos j\u00f3venes gallegas con ataxia telangiectasia que participaron en esta media marat\u00f3n con salida y meta en Nar\u00f3n (A Coru\u00f1a). Sus sillas fueron empujadas durante esos 21 kil\u00f3metros por un grupo de m\u00e1s de 25 corredores solidarios gallegos, que se prestaron a colaborar para motivar a estas chicas en su lucha diaria con esta condici\u00f3n altamente incapacitante, y comprometidos con dar a conocer esta enfermedad infradiagnosticada. Patricia, de Lal\u00edn (Pontevedra), quiso dar las gracias a los corredores solidarios \u201cpor vivir esta experiencia tan bonita, un d\u00eda tan emocionante\u201d. Sonia, de Ferrol (A Coru\u00f1a), confes\u00f3 que se emociona mucho, \u201csobre todo cuando llego a la meta\u201d. 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