{"id":134057,"date":"2025-04-24T17:13:30","date_gmt":"2025-04-24T15:13:30","guid":{"rendered":"https:\/\/ccbierzo.com\/?p=134057"},"modified":"2025-04-24T17:23:14","modified_gmt":"2025-04-24T15:23:14","slug":"solidaridad-con-mateo","status":"publish","type":"post","link":"https:\/\/ccbierzo.com\/gl\/solidaridad-con-mateo\/","title":{"rendered":"Solidaridad"},"content":{"rendered":"\n<p>La vicepresidenta del Consejo Comarcal del Bierzo, <strong>Lorena Fern\u00e1ndez<\/strong>, recibi\u00f3 este jueves al sevillano<strong> Alfonso Mora<\/strong>, quien est\u00e1 recorriendo el Camino de Santiago para dar visibilidad a una enfermedad ultrarrara causada por la mutaci\u00f3n del gen NEK8. Esta iniciativa busca concienciar y recaudar fondos para la investigaci\u00f3n de esta patolog\u00eda, que afecta a <strong>Mateo<\/strong>, un peque\u00f1o de 5 a\u00f1os que vive en Parla (Madrid).\u00a0<\/p>\n\n\n\n<p>Esta mutaci\u00f3n provoca <strong>fibrosis en \u00f3rganos vitales<\/strong> hasta que estos dejan de funcionar, lo que ha provocado que el ni\u00f1o haya tenido que someterse a m\u00faltiples trasplantes. Actualmente, el investigador Joan Roig, del Instituto de Biolog\u00eda Molecular de Barcelona, lidera un estudio sobre esta mutaci\u00f3n, pero se necesita m\u00e1s apoyo para avanzar en la investigaci\u00f3n. Por ello, la familia de Mateo ha creado la web <a href=\"https:\/\/www.asociacionunavidaparamateo.com\/\"><strong>https:\/\/www.asociacionunavidaparamateo.com<\/strong><\/a> y la ONG &#8220;Una Vida para Mateo&#8221; (Bizum ONG 06851) para recaudar fondos y ayudar a otros ni\u00f1os en su misma situaci\u00f3n.<\/p>\n\n\n\n<div style=\"height:30px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<figure class=\"wp-block-image aligncenter size-medium\"><img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"225\" src=\"https:\/\/ccbierzo.com\/wp-content\/uploads\/2025\/04\/Lorena-Fernandez-y-Alfonso-Mora-300x225.jpeg\" alt=\"\" class=\"wp-image-134058\"\/><figcaption class=\"wp-element-caption\">Lorena Fern\u00e1ndez recibi\u00f3 este jueves a Alfonso Mora.<\/figcaption><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>La vicepresidenta recibi\u00f3 a Alfonso Mora, un sevillano que realiza el Camino de Santiago para dar visibilidad a la enfermedad de Mateo.<\/p>\n","protected":false},"author":3,"featured_media":134058,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[19],"tags":[294],"class_list":["post-134057","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-social","tag-ponferrada"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - 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