{"id":2227,"date":"2020-04-21T16:24:47","date_gmt":"2020-04-21T16:24:47","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2020\/04\/21\/reto-internacional-26steps4at-ante-la-crisis-del-covid19-nos-ayudas\/"},"modified":"2026-03-02T12:01:50","modified_gmt":"2026-03-02T12:01:50","slug":"reto-internacional-26steps4at-ante-la-crisis-del-covid19-nos-ayudas","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2020\/04\/21\/reto-internacional-26steps4at-ante-la-crisis-del-covid19-nos-ayudas\/","title":{"rendered":"Reto internacional #26steps4AT ante la crisis del Covid19. \u00bfNos ayudas?"},"content":{"rendered":"

\"RetoLos ni\u00f1os y j\u00f3venes con ataxia telangiectasia son grupo de riesgo<\/strong> ante el Covid19, por su inmunodeficiencia y a veces por sus patolog\u00edas coronarias, pero por suerte hoy podemos informar de que ninguna de nuestras familias se ha visto afectada por el virus. Aunque casi todos en nuestro entorno tenemos amigos, familiares o conocidos que han vivido la enfermedad o han fallecido. Esperamos que esta situaci\u00f3n pase lo antes posible, y agradecemos a todos los que est\u00e1n luchando en primera l\u00ednea de batalla y trabajando estos d\u00edas por el bien de todos.<\/p>\n

Nuestras chicas y chicos est\u00e1n en sus casas, sin ir a sus centros educativos o talleres, cuidados por sus familias, pero sin poder acceder a terapias tan necesarias para ellos como fisioterapia, logopedia, hidroterapia… Tanto los ensayos cl\u00ednicos como la investigaci\u00f3n se han visto frenados. El Covid19 tambi\u00e9n est\u00e1 dejando estos efectos secundarios que apenas se perciben. Nuestros eventos solidarios para financiar la investigaci\u00f3n de la ataxia telangiectasia han quedado cancelados. Y no podemos quedarnos de brazos cruzados. \u00bfNos ayudas?, Estaremos 26 pasos m\u00e1s cerca de la cura.<\/p>\n

\u00bfAceptas el reto de este domingo 26 de abril? <\/strong><\/p>\n

Con nuestros ni\u00f1os y j\u00f3venes con ataxia telangiectasia nos unimos al reto internacional #26steps4AT<\/strong> para recaudar fondos para que no se frene la investigaci\u00f3n de esta enfermedad gen\u00e9tica y neurodegenerativa que a\u00fan no tiene cura ni tratamiento.<\/p>\n

Muchos eventos solidarios organizados por nuestra asociaci\u00f3n de familias, Aefat, se han visto cancelados por la pandemia del Covid19, perjudicando gravemente nuestras opciones para seguir con proyectos de investigaci\u00f3n como el que financiamos en la Cl\u00ednica Universidad de Navarra<\/a>, alej\u00e1ndonos a\u00fan m\u00e1s de una soluci\u00f3n para una enfermedad degenerativa como esta. Esta situaci\u00f3n es a nivel mundial.<\/p>\n

Por ejemplo, este domingo 26 de abril<\/strong> se iba a celebrar la Marat\u00f3n de Londres, donde muchas ONGs iban a recaudar fondos para sus causas. Por eso, los organizadores de los principales eventos deportivos en ReinoUnido han decidido crear un reto online para suplir esa cancelaci\u00f3n, #TwoPointSixChallege. <\/p>\n

Enlazando con este reto, la asociaci\u00f3n inglesa de familias con ataxia telangiectasia Action for AT<\/strong> nos propone a las asociaciones de AT de distintos pa\u00edses colaborar en este reto internacional, relacionado con este n\u00famero, el 26, pero adaptado a nuestra causa con el lema #26steps4AT<\/a>. Nuestros chicos realizar\u00e1n el esfuerzo de hacer 26 pasos y en sus v\u00eddeos invitar\u00e1n a otras personas a participar y donar. T\u00fa puedes seguir esa cadena.<\/p>\n

\u00bfC\u00f3mo puedes colaborar?<\/strong><\/p>\n

1 – Haz algo relacionado con el n\u00famero 26 o 2,6 (26 saltos, correr 2,6 km en casa, cocinar 26 galletas… lo que quieras). Graba un v\u00eddeo (m\u00e1x. 50 segundos) y publ\u00edcalo con este texto en tus redes sociales (Facebook, Twitter, Instagram) antes del domingo 26 a las 20 horas. Puede participar gente de todas las edades. Etiqueta a @Aefat y a\u00f1ade #26steps4AT<\/p>\n

2. Nomina a dos personas para que hagan el reto y sigan la cadena<\/p>\n

3. Dona lo que quieras aqu\u00ed: https:\/\/www.migranodearena.org\/reto\/21806\/26steps4at-ataxiatelangiectasia-26-abril-2020<\/a><\/p>\n

A esta campa\u00f1a se han unido tambi\u00e9n las asociaciones de familias con ataxia telengiectasia de otros pa\u00edses<\/strong> como A-T Society (Reino Unido), BrAshA-T (Australia), o AT Children’s Project (Estados Unidos).<\/p>\n

En nuestro caso, desde Aefat tenemos que aplazar nuestra participaci\u00f3n en las cuatro maratones con el Equipo Zurich Aefat<\/strong><\/a> (Barcelona cancelada, pendientes Donostia\/San Sebasti\u00e1n y M\u00e1laga este a\u00f1o), la Carrera Aefat M\u00e1laga<\/a><\/strong> de septiembre y no sabemos a\u00fan si tambi\u00e9n el Festival Solidario Aitzina Folk<\/strong><\/a> que se celebra en noviembre y diciembre en Vitoria-Gasteiz. Adem\u00e1s, tambi\u00e9n se han cancelado otros eventos como fiestas de final de curso, bodas o eventos deportivos y culturales que nos iban a realizar una donaci\u00f3n. \u00a1Nos quedamos sin apoyos! \u00a1Te necesitamos!<\/p>\n

\u00a1\u00a1Esos 26 pasos nos llevar\u00e1n m\u00e1s cerca de una cura!!<\/p>\n

\u00bfNos ayudas?<\/p>\n","protected":false},"excerpt":{"rendered":"

\"RetoLos ni\u00f1os y j\u00f3venes con ataxia telangiectasia son grupo de riesgo<\/strong> ante el Covid19, por su inmunodeficiencia y a veces por sus patolog\u00edas coronarias, pero por suerte hoy podemos informar de que ninguna de nuestras familias se ha visto afectada por el virus. Aunque casi todos en nuestro entorno tenemos amigos, familiares o conocidos que han vivido la enfermedad o han fallecido. Esperamos que esta situaci\u00f3n pase lo antes posible, y agradecemos a todos los que est\u00e1n luchando en primera l\u00ednea de batalla y trabajando estos d\u00edas por el bien de todos.<\/p>\n","protected":false},"author":1,"featured_media":2218,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[807],"tags":[345,341,350,60,55,343,349,340,248,344,116,188,347,346,348,342,68],"class_list":["post-2227","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-deporte-solidario","tag-26-de-abril","tag-26steps4at","tag-action-for-at","tag-aefat","tag-ataxia-telangiectasia","tag-challenge","tag-coronavirus","tag-covid19","tag-diadelasenfermedadesraras","tag-enfermedadesr-raras","tag-investigacion","tag-jon","tag-recaudacion-de-fondos","tag-reoto-solidario","tag-solidaridad","tag-twopointsixchallenge","tag-vitoria-gasteiz"],"acf":[],"yoast_head":"\nReto internacional #26steps4AT ante la crisis del Covid19. \u00bfNos ayudas? - 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=\"Reto internacional #26steps4AT ante la crisis del Covid19. \u00bfNos ayudas? - Aefat\" \/>\n<meta property=\"og:description\" content=\"Los ni\u00f1os y j\u00f3venes con ataxia telangiectasia son grupo de riesgo ante el Covid19, por su inmunodeficiencia y a veces por sus patolog\u00edas coronarias, pero por suerte hoy podemos informar de que ninguna de nuestras familias se ha visto afectada por el virus. 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