{"id":25909,"date":"2014-06-19T00:00:00","date_gmt":"2014-06-19T00:00:00","guid":{"rendered":"https:\/\/ayuntamiento.coriaenimagenes.com\/patricia-parro-abanderada-de-san-juan-2014-destina-el-donativo-del-libro-a-la-fundacion-sindrome-de-dravet\/"},"modified":"2023-09-18T12:39:58","modified_gmt":"2023-09-18T10:39:58","slug":"patricia-parro-abanderada-de-san-juan-2014-destina-el-donativo-del-libro-a-la-fundacion-sindrome-de-dravet","status":"publish","type":"post","link":"https:\/\/coria.org\/ayuntamiento\/index.php\/2014\/06\/19\/patricia-parro-abanderada-de-san-juan-2014-destina-el-donativo-del-libro-a-la-fundacion-sindrome-de-dravet\/","title":{"rendered":"Patricia Parro, Abandera de San Juan 2014, destina el donativo del libro a la Fundaci\u00f3n S\u00edndrome de Dravet"},"content":{"rendered":"\n<p><b>El precio del libro ser\u00e1 de 2 euros, y lo recaudado ir\u00e1 destinado \u00edntegramente a dicha Fundaci\u00f3n <\/b><\/p>\n\n<figure class=\"wp-block-post-featured-image\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1440\" src=\"https:\/\/coria.org\/ayuntamiento\/wp-content\/uploads\/2014\/06\/14453209081_7343d9a720_o-scaled.jpg\" class=\"attachment-post-thumbnail size-post-thumbnail wp-post-image\" alt=\"\" style=\"object-fit:cover;\" srcset=\"https:\/\/coria.org\/ayuntamiento\/wp-content\/uploads\/2014\/06\/14453209081_7343d9a720_o-scaled.jpg 2560w, https:\/\/coria.org\/ayuntamiento\/wp-content\/uploads\/2014\/06\/14453209081_7343d9a720_o-300x169.jpg 300w, https:\/\/coria.org\/ayuntamiento\/wp-content\/uploads\/2014\/06\/14453209081_7343d9a720_o-1024x576.jpg 1024w, https:\/\/coria.org\/ayuntamiento\/wp-content\/uploads\/2014\/06\/14453209081_7343d9a720_o-768x432.jpg 768w, https:\/\/coria.org\/ayuntamiento\/wp-content\/uploads\/2014\/06\/14453209081_7343d9a720_o-1536x864.jpg 1536w, https:\/\/coria.org\/ayuntamiento\/wp-content\/uploads\/2014\/06\/14453209081_7343d9a720_o-2048x1152.jpg 2048w\" sizes=\"auto, (max-width: 2560px) 100vw, 2560px\" \/><\/figure>\n\n<p><span style=\"font-family: verdana,arial,helvetica,sans-serif; font-size: small;\">Esta ma\u00f1ana, la Abanderada de las fiestas de San Juan 2014 Patricia Parro D\u00edaz, junto al Subdirector de Fundraising (Fundaci\u00f3n S\u00edndrome de Dravet, delegaci\u00f3n en Espa\u00f1a), Alfredo Gonz\u00e1lez Carbajosa, y otro miembro de la Fundaci\u00f3n, el cauriense, Daniel Fern\u00e1ndez Gordo, han dado a conocer que el libro de San Juan 2014 se podr\u00e1 adquirir, igualmente que el a\u00f1o pasado, en la oficina de turismo del Ayuntamiento de Coria bajo el simb\u00f3lico donativo de 2 euros. <\/span><\/p>\n\n\n<p><span style=\"font-family: verdana,arial,helvetica,sans-serif; font-size: small;\">La Abanderada de las Fiestas ha dicho, que \u00abdespu\u00e9s de conocer el caso de Daniel ha tomado esta decisi\u00f3n, ya que a partir de estos peque\u00f1os detalles se puede ayudar de una gran manera a familias de nuestra regi\u00f3n y de toda Espa\u00f1a, en la que en total debe haber unos 200 pacientes diagnosticados, con este dinero podemos contribuir y ayudar en la labor de investigaci\u00f3n de esta enfermedad.\u00bb<\/span><\/p>\n\n\n<p><span style=\"font-family: verdana,arial,helvetica,sans-serif; font-size: small;\">El libro se espera que est\u00e9 a disposici\u00f3n del p\u00fablico durante este fin de semana, seguramente a partir del s\u00e1bado por la ma\u00f1ana. Al igual que el a\u00f1o anterior, se podr\u00e1 adquirir en la Oficina de Turismo del Ayuntamiento de Coria, sita junto a \u00e9ste, y el donativo a dar ser\u00e1 de dos euros como precio simb\u00f3lico. <\/span><\/p>\n\n\n<p><span style=\"font-family: verdana,arial,helvetica,sans-serif; font-size: small;\">Para finalizar quiso recordar que \u00abel destino de ese dinero ir\u00e1 \u00edntegramente a esta Fundaci\u00f3n que est\u00e1 haciendo una gran e importante labor con todas aquellas familias que sufren la enfermedad en la vida de sus hijos\u00bb.<\/span><\/p>\n\n\n<p><span style=\"font-family: verdana,arial,helvetica,sans-serif; font-size: small;\">Por su parte, Alfredo Gonz\u00e1lez Carbajosa, Subdirector de Fundraising (Fundaci\u00f3n S\u00edndrome de Dravet, delegaci\u00f3n en Espa\u00f1a), junto a Daniel Fern\u00e1ndez Gordo, han querido agradecer el detalle que han tenido con ellos y con su Fundaci\u00f3n, y agradecer de nuevo que la abanderada haya pensado en ellos.<\/span><\/p>\n\n\n<p><span style=\"font-family: verdana,arial,helvetica,sans-serif; font-size: small;\">Para finalizar, Gonz\u00e1lez Carbajosa ha explicado el proceso de la enfermedad, para la que no se conoce cura ni f\u00e1rmacos espec\u00edficos, que aparece durante el primer a\u00f1o de vida de los ni\u00f1os, caracteriz\u00e1ndose por convulsiones cl\u00f3nicas o t\u00f3nico-cl\u00f3nicas, generalizadas o unilaterales de duraci\u00f3n prolongada tanto en un contexo febril como en ocasiones en ausencia de fiebre. <\/span><\/p>\n\n\n<p><span style=\"font-family: verdana,arial,helvetica,sans-serif; font-size: small;\">El S\u00edndrome de Dravet es una enfermedad de origen gen\u00e9tico y se encuadra dentro de la familia patol\u00f3gica de las canalopat\u00edas, ya que aproximadamente el 75% de los pacientes afectados presenta una&nbsp;mutaci\u00f3n en el gen SCN1A.<\/span><\/p>\n\n\n<p><span style=\"font-family: verdana,arial,helvetica,sans-serif; font-size: small;\">Por ello, este dinero, seg\u00fan ha explicado el Alfredo Gonz\u00e1lez, \u00abir\u00e1 destinado \u00edntegramente a la realizaci\u00f3n del Test Gen\u00e9tico, ya que tiene un coste muy elevado, m\u00e1s de 1200 euros, y con la asociaci\u00f3n se garantiza un test gen\u00e9tico gratuito a todas las sospechas de Dravet, que permite identificar la causa gen\u00e9tica molecular del S\u00edndrome de Dravet\u00bb.<\/span><\/p>\n\n\n<p><span style=\"font-family: verdana,arial,helvetica,sans-serif; font-size: small;\">&nbsp;<\/span><\/p>\n\n\n<p><iframe loading=\"lazy\" src=\"http:\/\/www.youtube.com\/embed\/JHABYRdVv9k\" width=\"640\" height=\"360\" frameborder=\"0\"><\/iframe><\/p>\n","protected":false},"excerpt":{"rendered":"<p>El precio del libro ser\u00e1 de 2 euros, y lo recaudado ir\u00e1 destinado \u00edntegramente a dicha Fundaci\u00f3n Esta ma\u00f1ana, la Abanderada de las fiestas de San Juan 2014 Patricia Parro D\u00edaz, junto al Subdirector de Fundraising (Fundaci\u00f3n S\u00edndrome de Dravet, delegaci\u00f3n en Espa\u00f1a), Alfredo Gonz\u00e1lez Carbajosa, y otro miembro de la Fundaci\u00f3n, el cauriense, Daniel [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":31169,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_uag_custom_page_level_css":"","footnotes":""},"categories":[2],"tags":[3,4],"class_list":["post-25909","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticias","tag-coria","tag-extremadura"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Patricia Parro, Abandera de San Juan 2014, destina el donativo del libro a la Fundaci\u00f3n S\u00edndrome de Dravet - Ayuntamiento de Coria<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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