{"id":2418,"date":"2021-07-14T10:11:04","date_gmt":"2021-07-14T10:11:04","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2021\/07\/14\/ies-juana-de-castilla-de-madrid-colabora-con-aefat\/"},"modified":"2026-03-02T12:01:20","modified_gmt":"2026-03-02T12:01:20","slug":"ies-juana-de-castilla-de-madrid-colabora-con-aefat","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2021\/07\/14\/ies-juana-de-castilla-de-madrid-colabora-con-aefat\/","title":{"rendered":"El IES Juana de Castilla de Madrid colabora con Aefat"},"content":{"rendered":"

\"Venta\u00c1ngeles, madre de una de nuestras chicas afectadas de Madrid, ha conseguido recaudar 1.460 euros<\/strong> con la venta de camisetas solidarias del Equipo Zurich Aefat durante estos meses de final de curso en el centro escolar de su hija Sara, que acaba de cumplir 15 a\u00f1os.<\/p>\n

En nombre de todas las familias que formamos parte de esta asociaci\u00f3n queremos agradecer la colaboraci\u00f3n de toda la comunidad educativa del IES Juana de Castilla de Madrid<\/strong><\/a>, y especialmente de Nuria<\/strong>, la fisioterapeuta del instituto de Sara, que ha promovido esta actividad, y de Concha,<\/strong> la directora del centro, que ha facilitado esta acci\u00f3n solidaria (ambas en la foto con Sara). <\/p>\n

Agradecemos enormemente la implicaci\u00f3n de los centros escolares de nuestros chicos y chicas en estas acciones solidarias que tambi\u00e9n tienen su efecto pedag\u00f3gico, ejemplarizante e inclusivo<\/strong>.<\/p>\n

Adem\u00e1s, Nuria es una de las fisioterapeutas<\/strong> que nos est\u00e1 ayudando en la elaboraci\u00f3n de la Gu\u00eda de Atenci\u00f3n al Paciente con Ataxia Telangiectasia que estamos coordinando desde Aefat con m\u00e1s de 55 especialistas de toda Espa\u00f1a.<\/p>\n

\"cartelLa familia de Sara colabora activamente con Aefat<\/strong>. De hecho, Sara ha sido una de las protagonistas este a\u00f1o 2021 del cartel de la campa\u00f1a nacional de Feder<\/a><\/strong> (Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras), junto con el escritor y presentador Christian G\u00e1lvez, la actriz Adriana Ugarte y nuestro compa\u00f1ero de otra asociaci\u00f3n, Daniel, de <\/span>la Asociaci\u00f3n ASMD Espa\u00f1a. Su imagen se ha podido ver en mupis por ciudades de toda Espa\u00f1a durante estos \u00faltimos meses.<\/p>\n

Sara tambi\u00e9n se implica en los eventos solidarios<\/strong> que organizamos, como la campa\u00f1a internacional #26steps4AT que desarrollamos al inicio de la pandemia, planteando un reto en el que participaron muchos de nuestros afectados y que pod\u00e9is ver en este v\u00eddeo<\/a>.<\/p>\n

Adem\u00e1s, Sara forma parte del Equipo Zurich Aefat<\/strong><\/a>, el equipo de afectados con ataxia telangiectasia y corredores solidarios que empujan sus sillas, que participa en las cuatro Zurich Maratones que se celebran en Sevilla, M\u00e1laga, Donostia\/San Sebasti\u00e1n y Barcelona cada a\u00f1o.<\/p>\n

Precisamente gran parte de las camisetas solidarias<\/strong> que se han vendido en este centro educativo madrile\u00f1o son las pertenecientes a este equipo maratoniano, que en esta \u00e9poca de pandemia ha estado parado con la cancelaci\u00f3n de las maratones pero espera regresar a la actividad en oto\u00f1o.<\/p>\n

\"mupi<\/p>\n

\"\u2764\ufe0f\"<\/span>Muchas gracias<\/strong> a Sara y familia, a todo el equipo del centro educativo y a todos los que nos hab\u00e9is ayudado comprando esas camisetas. Un peque\u00f1o gesto que colabora enormemente en nuestro objetivo: buscar una cura para la ataxia telangiectasia.<\/p>\n

Si t\u00fa tambi\u00e9n quieres ayudar:<\/span><\/strong><\/span><\/p>\n

\"\u2705\"Dona directamente con tu tarjeta en nuestra we<\/a>b<\/span><\/p>\n

\"\u2705\"<\/span>Bizum al 01274
\"\u2705\"<\/span>Bot\u00f3n Donar de nuestros Facebook <\/a>o Instagram<\/a>
\"\u2705\"<\/span>M\u00e1s opciones para colaborar aqu\u00ed<\/a>.\"\u2705\"Si quieres saber m\u00e1s sobre los proyectos de investigaci\u00f3n que financiamos desde Aefat, lee m\u00e1s aqu\u00ed<\/a>.<\/span><\/span><\/p>\n

\"Sara<\/p>\n

\"Llegada<\/span><\/p>\n

<\/span><\/p>\n

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

\"Venta\u00c1ngeles, madre de una de nuestras chicas afectadas de Madrid, ha conseguido recaudar 1.460 euros<\/strong> con la venta de camisetas solidarias del Equipo Zurich Aefat durante estos meses de final de curso en el centro escolar de su hija Sara, que acaba de cumplir 15 a\u00f1os.<\/p>\n","protected":false},"author":1,"featured_media":2414,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[812],"tags":[60,55,481,62,482,183,171],"class_list":["post-2418","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-alianzas-e-instituciones","tag-aefat","tag-ataxia-telangiectasia","tag-camisetas-solidarias","tag-enfermedades-raras","tag-ies-juana-de-castilla-de-madrid","tag-sara","tag-utilidad-publica"],"acf":[],"yoast_head":"\nEl IES Juana de Castilla de Madrid colabora con Aefat - Aefat<\/title>\n<meta name=\"robots\" content=\"noindex, follow, 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