{"id":2543,"date":"2022-05-19T08:56:58","date_gmt":"2022-05-19T08:56:58","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/05\/19\/nace-festival-moron-sevilla-ataxia-telangiectasia\/"},"modified":"2026-03-03T11:33:37","modified_gmt":"2026-03-03T11:33:37","slug":"nace-festival-moron-sevilla-ataxia-telangiectasia","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/05\/19\/nace-festival-moron-sevilla-ataxia-telangiectasia\/","title":{"rendered":"Nace un festival en Mor\u00f3n (Sevilla) para apoyar la investigaci\u00f3n de la ataxia telangiectasia"},"content":{"rendered":"

\"Equipo<\/p>\n

Mor\u00f3n de la Frontera, en Sevilla, se ha volcado en apoyar el I Festival Aefat Mor\u00f3n<\/strong>, que se celebrar\u00e1 este s\u00e1bado 21 de mayo<\/strong> para ayudar a Valent\u00edn, de 15 a\u00f1os, y todos los afectados con ataxia telangiectasia.<\/p>\n

Como algunos ya sab\u00e9is, se trata de una enfermedad rara, gen\u00e9tica y neurodegenerativa que a\u00fan no tiene cura ni tratamiento, y provoca discapacidad f\u00edsica progresiva, inmunodeficiencia y m\u00e1s riesgo de c\u00e1ncer, entre otras complicaciones.<\/p>\n

La familia de Valent\u00edn no consigui\u00f3 un diagn\u00f3stico correcto hasta hace poco m\u00e1s de un a\u00f1o. Despu\u00e9s de pasar por diferentes especialistas desde peque\u00f1o, numerosas pruebas y tras muchos problemas que han ido agravando su salud, les confirmaron que era ataxia telangiectasia<\/strong><\/a>. Despu\u00e9s del duro golpe, la familia contact\u00f3 con nosotros, Aefat<\/a>, la asociaci\u00f3n que agrupa a los pacientes y familias en Espa\u00f1a, y decidieron participar activamente en la b\u00fasqueda de donaciones para colaborar en financiar distintos proyectos de investigaci\u00f3n<\/a> a nivel nacional e internacional que est\u00e1n en marcha.<\/p>\n

Por ello, la familia de Valent\u00edn se ha lanzado a organizar este festival de m\u00fasica en la localidad natal de padre, Mor\u00f3n de la Frontera, este s\u00e1bado en el \u201cM\u00f3dulo azul\u201d. Tal como explica Valent\u00edn Ortiz<\/strong>, padre del joven Valent\u00edn, \u201cesta enfermedad es una cuenta atr\u00e1s y apenas hay investigaci\u00f3n, las familias tenemos que buscarnos los recursos para que se investigue y encontrar una cura\u201d.<\/p>\n

\"CartelEn el Festival, de entrada<\/strong> gratuita<\/strong>, actuar\u00e1n a las 13:00 h los grupos Azotea<\/strong> y Vericuetos<\/strong>, y a las 20 h las bandas Er Magui<\/strong>, Bobi  Band<\/strong> y Los Pollos de la Frontera<\/strong>. Tambi\u00e9n se han organizado actividades infantiles. Se recaudar\u00e1n fondos a trav\u00e9s de la venta de productos solidarios y las consumiciones en la barra de bar, a precios populares. Para los que no puedan asistir, hay disponible una \u201cFila 0<\/strong>\u201d: Bizum al 01274 o donaciones a trav\u00e9s de www.aefat.es\/dona<\/a>.<\/p>\n

Tanto la poblaci\u00f3n como las empresas y comercios de la zona est\u00e1n apoyando esta iniciativa solidaria<\/strong>, con donaciones, colaborando en el festival o colocando material gr\u00e1fico de la campa\u00f1a Dona Esperanza<\/em><\/a>, que Aefat est\u00e1 desarrollando a nivel nacional. La asociaci\u00f3n cuenta con 38 ni\u00f1os y j\u00f3venes afectados en Espa\u00f1a, diez de ellos en Andaluc\u00eda, y cinco de ellos en Sevilla.<\/p>\n

\u201cEs la primera vez que organizo algo as\u00ed pero al menos no te sientes solo porque aqu\u00ed me est\u00e1 apoyando todo el mundo, _se\u00f1ala Valent\u00edn_ y tengo que agradecer<\/strong> a todos<\/strong>, desde el Ayuntamiento de Mor\u00f3n, hasta las empresas, restaurantes y otros comercios, y todos los voluntarios, que muchos me conocen desde hace a\u00f1os, que est\u00e9n a mi lado, apoyando la investigaci\u00f3n de la enfermedad de mi hijo\u201d.<\/p>\n

Con el apoyo de sus familias, Aefat organiza<\/strong> distintos eventos deportivos, culturales y sociales<\/strong> para recaudar fondos, difundir y sensibilizar, como el Festival Solidario Aitzina Folk<\/strong> en Vitoria-Gasteiz desde hace 9 a\u00f1os, la Carrera Aefat M\u00e1laga<\/strong> desde hace 6 a\u00f1os, y el Equipo Zurich Aefat <\/strong>desde hace 5 a\u00f1os. Un equipo con el que participa en las maratones patrocinadas por la compa\u00f1\u00eda aseguradora, como la de Sevilla, que cuenta con m\u00e1s de 100 corredores solidarios de toda Espa\u00f1a que empujan las sillas de los afectados durante esos 42 km.<\/p>\n

\"Equipo<\/p>\n

Valent\u00edn (segundo por la derecha) particip\u00f3 en la llegada de la Zurich Marat\u00f3n de Sevilla 2022 con el Equipo Zurich Aefat.<\/em><\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

\"Equipo<\/p>\n

Mor\u00f3n de la Frontera, en Sevilla, se ha volcado en apoyar el I Festival Aefat Mor\u00f3n<\/strong>, que se celebrar\u00e1 este s\u00e1bado 21 de mayo<\/strong> para ayudar a Valent\u00edn, de 15 a\u00f1os, y todos los afectados con ataxia telangiectasia.<\/p>\n","protected":false},"author":1,"featured_media":2540,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[51],"tags":[60,230,55,520,62,319,466,112,351,116,527,528,231,183,197,126,232],"class_list":["post-2543","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actividades-solidarias","tag-aefat","tag-alcala-de-henares","tag-ataxia-telangiectasia","tag-conciertos","tag-enfermedades-raras","tag-equipo-zurich-aefat","tag-evento-solidario","tag-festival","tag-festival-solidario","tag-investigacion","tag-moron","tag-moron-de-la-frontera","tag-multimedia","tag-sara","tag-sevilla","tag-tapones-solidarios","tag-tv-alcala"],"acf":[],"yoast_head":"\nNace un festival en Mor\u00f3n (Sevilla) para apoyar la investigaci\u00f3n de la ataxia telangiectasia - Aefat<\/title>\n<meta name=\"robots\" content=\"noindex, follow, max-snippet:-1, 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