{"id":10292,"date":"2024-09-07T06:49:49","date_gmt":"2024-09-07T06:49:49","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2024\/09\/07\/silvia-avila-madre-un-nino-con-distrofia-duchenne-no-podemos-esperar-dos-anos-por-un-medicamento-tiempo-duchenne-no-se-recupera\/"},"modified":"2024-09-07T06:49:49","modified_gmt":"2024-09-07T06:49:49","slug":"silvia-avila-madre-un-nino-con-distrofia-duchenne-no-podemos-esperar-dos-anos-por-un-medicamento-tiempo-duchenne-no-se-recupera","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2024\/09\/07\/silvia-avila-madre-un-nino-con-distrofia-duchenne-no-podemos-esperar-dos-anos-por-un-medicamento-tiempo-duchenne-no-se-recupera\/","title":{"rendered":"Silvia \u00c1vila, madre de Alonso: \u00abNo podemos esperar dos a\u00f1os un medicamento, el tiempo en Duchenne no se recupera\u00bb"},"content":{"rendered":"

Leemos en Discapacidad la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n

\n

Uno de cada 3.500 ni\u00f1os nace en Espa\u00f1a con Distrofia Muscular de Duchenne<\/a>, una enfermedad rara<\/a>, degenerativa que se manifiesta desde los primeros a\u00f1os de vida. Gracias a que, en los \u00faltimos a\u00f1os, familias de todo el mundo se han unido para que se investigue, hoy d\u00eda la esperanza de vida es mayor, pero las familias siguen peleando por una cura y porque los tratamientos que van saliendo se pongan, cuanto antes, a disposici\u00f3n de los pacientes.<\/p>\n

Silvia \u00c1vila, presidenta de la asociaci\u00f3n Duchenne Parent Project Espa\u00f1a<\/b>, lucha cada d\u00eda porque as\u00ed sea para que, tanto su hijo Alonso, de 14 a\u00f1os, como todos los dem\u00e1s afectados, \u00abpuedan mirar al futuro con ilusi\u00f3n y puedan cumplir sus sue\u00f1os\u00bb. <\/p>\n

La investigaci\u00f3n sigue siendo nuestro objetivo principal, porque es lo que va a salvarlos<\/h1>\n

Hemos pedido que, o nos reconozcan directamente el 33% de discapacidad o incluyan la fisioterapia en el sistema p\u00fablico <\/h1>\n<\/div>\n

Fuente: Discapacidad https:\/\/www.20minutos.es\/noticia\/5630896\/0\/silvia-avila-madre-un-nino-con-distrofia-duchenne-no-podemos-esperar-dos-anos-por-un-medicamento-tiempo-duchenne-no-se-recupera\/<\/p>\n","protected":false},"excerpt":{"rendered":"

Uno de cada 3.500 ni\u00f1os nace en Espa\u00f1a con Distrofia Muscular de Duchenne, una enfermedad rara, degenerativa que se manifiesta desde los primeros a\u00f1os de…<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[],"class_list":["post-10292","post","type-post","status-publish","format-standard","hentry","category-noticias"],"yoast_head":"\nSilvia \u00c1vila, madre de Alonso: "No podemos esperar dos a\u00f1os un medicamento, el tiempo en Duchenne no se recupera" - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/sindromecharge.es\/index.php\/2024\/09\/07\/silvia-avila-madre-un-nino-con-distrofia-duchenne-no-podemos-esperar-dos-anos-por-un-medicamento-tiempo-duchenne-no-se-recupera\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Silvia \u00c1vila, madre de Alonso: "No podemos esperar dos a\u00f1os un medicamento, el tiempo en Duchenne no se recupera" - 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