{"id":2174,"date":"2019-05-06T10:46:48","date_gmt":"2019-05-06T10:46:48","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2019\/05\/06\/aefat-en-maraton-fiz-2019\/"},"modified":"2026-03-02T12:02:01","modified_gmt":"2026-03-02T12:02:01","slug":"aefat-en-maraton-fiz-2019","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2019\/05\/06\/aefat-en-maraton-fiz-2019\/","title":{"rendered":"\u00a1Volvemos a la Marat\u00f3n Fiz de Vitoria-Gasteiz!"},"content":{"rendered":"

\"Aefat<\/p>\n

El vitoriano Jon, de 16 a\u00f1os, uno de los afectados por ataxia telangiectasia en el Pa\u00eds Vasco, ha querido repetir la experiencia del a\u00f1o pasado en la marat\u00f3n de su ciudad y ha invitado a sus compa\u00f1eros de asociaci\u00f3n a compartir esta vivencia tan motivadora y positiva para ellos y sus familias. Una oportunidad para adem\u00e1s dar a conocer esta enfermedad minoritaria, altamente discapacitante, que es complicada de diagnosticar al confundirse con otros trastornos neurol\u00f3gicos.<\/p>\n

As\u00ed que seis ni\u00f1os y j\u00f3venes con ataxia telangiectasia (AT), con edades entre 10 y 23 a\u00f1os, participar\u00e1n por segundo a\u00f1o en la EDP Vitoria Gasteiz Marat\u00f3n Mart\u00edn Fiz <\/strong>del pr\u00f3ximo domingo 12 de de mayo de 2019. Se trata de una iniciativa de Aefat, la asociaci\u00f3n que agrupa a las familias con afectados por esta enfermedad rara y neurodegenerativa que a\u00fan no tiene cura, y que afecta a m\u00e1s de 30 ni\u00f1os y j\u00f3venes en Espa\u00f1a, dos de ellos en el Pa\u00eds Vasco.<\/p>\n

Las chicas y chicos con ataxia telangiectasia que participar\u00e1n en esta carrera de 42 km ser\u00e1n los mellizos Adri\u00e1n y B\u00e1rbara (Burgos, 13 a\u00f1os), \u00c1lex (Valencia, 15 a\u00f1os), Javi (Murcia, 23 a\u00f1os), Jon (Vitoria-Gasteiz, 16 a\u00f1os) y Lola (10 a\u00f1os, Barcelona)<\/strong>. Para algunos de ellos, que ya han participado en m\u00e1s de diez maratones en distintas ciudades en los \u00faltimos dos a\u00f1os, esta actividad sigue siendo de las m\u00e1s motivadoras para luchar contra sus obst\u00e1culos del d\u00eda a d\u00eda.<\/p>\n

Sus sillas especiales ser\u00e1n empujadas por un grupo de m\u00e1s de 20 corredores solidarios<\/strong> procedentes de distintas localidades del Pa\u00eds Vasco, La Rioja, Huesca, M\u00e1laga, Barcelona\u2026 Entre los corredores que empujar\u00e1n las sillas tambi\u00e9n estar\u00e1 Alfonso, el abuelo de Lola. Todos lucir\u00e1n el lema #CorreFrenalaAT, con la imagen de Aefat, este a\u00f1o en camisetas blancas.<\/p>\n

Aefat<\/a><\/strong>, la asociaci\u00f3n que agrupa a los afectados en el estado espa\u00f1ol y que tiene sede en Vitoria-Gasteiz, fomenta la participaci\u00f3n de los ni\u00f1os y j\u00f3venes afectados en distintas maratones para favorecer acciones de deporte inclusivo que generen ejemplo de superaci\u00f3n y lucha para ellos, y para recaudar fondos para el proyecto de investigaci\u00f3n que Aefat est\u00e1 financiando en la Cl\u00ednica Universidad de Navarra.<\/p>\n

Patxi Vill\u00e9n<\/strong>, presidente de Aefat, padre de Jon y responsable tambi\u00e9n del festival solidario Aitzina Folk que se celebra desde hace seis a\u00f1os en la capital alavesa, destacaba que \u201ccada vez que participamos en una marat\u00f3n es un chute de energ\u00eda para nuestros chicos, una excusa para reunirnos las familias y compartir experiencias enriquecedoras, y una forma de concienciar a la poblaci\u00f3n en la lucha contra las enfermedades raras, que nos pueden tocar a todos\u201d. En este reto tambi\u00e9n colabora el hotel NH Canciller Ayala Vitoria<\/strong>, en el alojamiento solidario de las familias de los afectados, y MRW<\/strong>, en el env\u00edo de las sillas especiales. Por su parte, la organizaci\u00f3n de la carrera facilita los dorsales simb\u00f3licos de los j\u00f3venes participantes afectados con ataxia telangiectasia.<\/p>\n

Aefat<\/strong> es una asociaci\u00f3n sin \u00e1nimo de lucro creada en 2009 y declarada de utilidad p\u00fablica desde 2014, que est\u00e1 formada por familiares y personas relacionadas con enfermos de ataxia telangiectasia de diferentes puntos de Espa\u00f1a. Tambi\u00e9n mantiene contacto cercano con las familias de afectados en Iberoam\u00e9rica, y se relaciona con asociaciones similares europeas y americanas. Aefat pertenece a FEDER<\/a> (Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras) y FEDAES<\/a> (Federaci\u00f3n de Ataxias de Espa\u00f1a).<\/p>\n

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

\"Aefat<\/p>\n

El vitoriano Jon, de 16 a\u00f1os, uno de los afectados por ataxia telangiectasia en el Pa\u00eds Vasco, ha querido repetir la experiencia del a\u00f1o pasado en la marat\u00f3n de su ciudad y ha invitado a sus compa\u00f1eros de asociaci\u00f3n a compartir esta vivencia tan motivadora y positiva para ellos y sus familias. Una oportunidad para adem\u00e1s dar a conocer esta enfermedad minoritaria, altamente discapacitante, que es complicada de diagnosticar al confundirse con otros trastornos neurol\u00f3gicos.<\/p>\n

As\u00ed que seis ni\u00f1os y j\u00f3venes con ataxia telangiectasia (AT), con edades entre 10 y 23 a\u00f1os, participar\u00e1n por segundo a\u00f1o en la EDP Vitoria Gasteiz Marat\u00f3n Mart\u00edn Fiz <\/strong>del pr\u00f3ximo domingo 12 de de mayo de 2019. Se trata de una iniciativa de Aefat, la asociaci\u00f3n que agrupa a las familias con afectados por esta enfermedad rara y neurodegenerativa que a\u00fan no tiene cura, y que afecta a m\u00e1s de 30 ni\u00f1os y j\u00f3venes en Espa\u00f1a, dos de ellos en el Pa\u00eds Vasco.<\/p>\n","protected":false},"author":1,"featured_media":2172,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[807],"tags":[60,55,170,157,64,180],"class_list":["post-2174","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-deporte-solidario","tag-aefat","tag-ataxia-telangiectasia","tag-encuentro-aefat","tag-granada-hoy","tag-maraton","tag-somos-pacientes"],"acf":[],"yoast_head":"\n\u00a1Volvemos a la Marat\u00f3n Fiz de Vitoria-Gasteiz! - 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=\"\u00a1Volvemos a la Marat\u00f3n Fiz de Vitoria-Gasteiz! - Aefat\" \/>\n<meta property=\"og:description\" content=\"El vitoriano Jon, de 16 a\u00f1os, uno de los afectados por ataxia telangiectasia en el Pa\u00eds Vasco, ha querido repetir la experiencia del a\u00f1o pasado en la marat\u00f3n de su ciudad y ha invitado a sus compa\u00f1eros de asociaci\u00f3n a compartir esta vivencia tan motivadora y positiva para ellos y sus familias. 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