{"id":9450,"date":"2023-10-23T06:49:10","date_gmt":"2023-10-23T06:49:10","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2023\/10\/23\/enfermos-ela-lanzan-una-cancion-solidaria-que-es-un-canto-amor-vida\/"},"modified":"2023-10-23T06:49:10","modified_gmt":"2023-10-23T06:49:10","slug":"enfermos-ela-lanzan-una-cancion-solidaria-que-es-un-canto-amor-vida","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2023\/10\/23\/enfermos-ela-lanzan-una-cancion-solidaria-que-es-un-canto-amor-vida\/","title":{"rendered":"\u00abSo\u00f1\u00e9 con vivir\u00bb, enfermos de ELA lanzan una canci\u00f3n solidaria que es un canto de amor a la vida"},"content":{"rendered":"

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

\n

Enfermos de esclerosis lateral amiotr\u00f3fica (ELA)<\/a> presentan en redes sociales una canci\u00f3n \u2018So\u00f1\u00e9 con vivir\u2019 para revindicar su derecho a una existencia digna. Interpretada por el grupo Los Meconios<\/b>, es un canto de amor a la vida, que lleva ya miles de reproducciones.<\/p>\n

Para promocionar la canci\u00f3n, Jordi Savat\u00e9, activista, youtuber y coach, que lleva 9 a\u00f1os con ELA<\/b>, anima a compartir la canci\u00f3n en los perfiles sociales y a realizar donativos para la investigaci\u00f3n en esta enfermedad. \u00abLos Meconios han hecho esta preciosa canci\u00f3n para visibilizar la ELA y para pedir la #LeyELA ya<\/b>. Todos los donativos se destinan a la investigaci\u00f3n ELA del Vall d’ Hebron Institut de Recerca.<\/p>\n

Su letra es toda una declaraci\u00f3n de intenciones <\/b>para las personas con esclerosis lateral amiotr\u00f3fica: \u201cSo\u00f1\u00e9 tan s\u00f3lo con tener derecho a una vida digna\/ No pido m\u00e1s que ver salir el sol un nuevo d\u00eda\/ y en silencio gritar\u00e9 que la vida es un regalo\/ Y jam\u00e1s desistir\u00e9, por vivir yo luchar\u00e9\/ No tengo dudas que afrontar\/ Mi decisi\u00f3n est\u00e1 tomada\/ No quiero el mundo abandonar mientras en \u00e9l haya esperanza\/ No hay nada que pueda vencer mis ganas de vivir la vida \/ Y mientras viva so\u00f1ar\u00e9 con ver un nuevo amanecer\u201d.<\/p>\n

Muchos de los pacientes de ELA se ven abocados a no seguir viviendo para no pagar los tratamientos de soporte vital y no sobrecargar a sus familiares<\/b> con los cuidados que precisan.<\/p>\n

Adem\u00e1s, hay que recordar que la Ley de la ELA no sali\u00f3 adelante en la pasada legislatura,<\/b> por lo que la calidad de vida de los pacientes sigue siendo precaria, debido a la severa discapacidad que produce.<\/p>\n

En este sentido, el Senado aprob\u00f3 el pasado 17 de octubre<\/a> por 146 votos a favor, ninguno en contra y 115 abstenciones la moci\u00f3n del Grupo Parlamentario Popular por la que se pide al Gobierno la creaci\u00f3n de un Centro Nacional de Investigaci\u00f3n de la Esclerosis Lateral Amiotr\u00f3fica (ELA), as\u00ed como blindar por ley la ayuda para que estos pacientes y sus familias tengan la mejor calidad de vida posible.<\/p>\n<\/div>\n

Fuente: Discapacidad https:\/\/www.20minutos.es\/noticia\/5183655\/0\/enfermos-ela-lanzan-una-cancion-solidaria-que-es-un-canto-amor-vida\/<\/p>\n","protected":false},"excerpt":{"rendered":"

Enfermos de esclerosis lateral amiotr\u00f3fica (ELA) presentan en redes sociales una canci\u00f3n \u2018So\u00f1\u00e9 con vivir\u2019 para revindicar su derecho a una existencia digna.<\/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-9450","post","type-post","status-publish","format-standard","hentry","category-noticias"],"yoast_head":"\n"So\u00f1\u00e9 con vivir", enfermos de ELA lanzan una canci\u00f3n solidaria que es un canto de amor a la vida - 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\/2023\/10\/23\/enfermos-ela-lanzan-una-cancion-solidaria-que-es-un-canto-amor-vida\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\""So\u00f1\u00e9 con vivir", enfermos de ELA lanzan una canci\u00f3n solidaria que es un canto de amor a la vida - 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