{"id":18346,"date":"2023-08-11T18:03:54","date_gmt":"2023-08-11T18:03:54","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=18346"},"modified":"2023-08-11T19:59:24","modified_gmt":"2023-08-11T19:59:24","slug":"nuestra-trayectoria-y-logros","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/es\/nuestra-trayectoria-y-logros\/","title":{"rendered":"Un a\u00f1o de progreso: nuestra trayectoria y nuestros logros"},"content":{"rendered":"<p>Hace exactamente un a\u00f1o naci\u00f3 la asociaci\u00f3n \"Lasst uns MDS heilen - DupMECP2\".<\/p>\n\n\n\n<p>La historia de la asociaci\u00f3n comenz\u00f3 con el diagn\u00f3stico de Matteo en 2021. Despu\u00e9s de tres a\u00f1os de incertidumbre y lucha para sus padres, David y Caroline Covini, finalmente se diagnostic\u00f3 el s\u00edndrome de duplicaci\u00f3n MECP2, una enfermedad tan rara que solo hay 260 casos registrados en todo el mundo.<\/p>\n\n\n\n<p>Unidos por el amor y la determinaci\u00f3n de marcar la diferencia para los ni\u00f1os con SMD, David y Caroline, ambos cient\u00edficos, se embarcaron en un viaje extraordinario. Este viaje desemboc\u00f3 en la creaci\u00f3n de \"Lasst uns MDS heilen\", una asociaci\u00f3n dedicada a acelerar la investigaci\u00f3n, proporcionar apoyo y fomentar la unidad entre las familias que se enfrentan a este reto.<\/p>\n\n\n\n<p>En mayo de 2022, mientras destacaban la lucha de los padres con enfermedades raras y sensibilizaban a los medios de comunicaci\u00f3n sobre los SMD, los Covini se cruzaron con las familias Susanne &amp; Gerald Molnar y Ana &amp; Boris Curic, directamente afectadas por el s\u00edndrome de duplicaci\u00f3n MECP2. Con la fuerte motivaci\u00f3n de contribuir a los esfuerzos por sus hijos, estas 2 familias se unieron a la junta de la asociaci\u00f3n, formando un equipo formidable y dedicado.<\/p>\n\n\n\n<p>Esta fecha no s\u00f3lo marca la creaci\u00f3n de la asociaci\u00f3n, sino que tambi\u00e9n celebra los incre\u00edbles esfuerzos realizados en la lucha contra el s\u00edndrome de duplicaci\u00f3n del gen MECP2. En tan solo un a\u00f1o se han conseguido logros notables:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Un equipo fuerte y apoyo global<\/strong>La junta directiva de la asociaci\u00f3n, junto con expertos cient\u00edficos, familiares y amigos, ha reunido a m\u00e1s de 130 miembros de m\u00e1s de 10 pa\u00edses. Juntos formamos una red mundial comprometida con el cambio.<\/li>\n<\/ul>\n\n\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Plataforma informativa multiling\u00fce<\/strong>La asociaci\u00f3n lanz\u00f3 <a href=\"https:\/\/dupmecp2.eu\/es\">www.dupmecp2.eu<\/a>un sitio web que ofrece informaci\u00f3n en varios idiomas sobre el s\u00edndrome de duplicaci\u00f3n MECP2. Esta plataforma sirve como centro de conocimiento y actualizaci\u00f3n para apoyar a las familias en su viaje.<\/li>\n<\/ul>\n\n\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Eventos y recaudaci\u00f3n de fondos<\/strong>La primera recaudaci\u00f3n de fondos y el primer evento en l\u00ednea de la asociaci\u00f3n sensibilizaron a la opini\u00f3n p\u00fablica y mostraron el poder de la determinaci\u00f3n colectiva. Se han recibido generosas donaciones, y actualmente se est\u00e1 planificando un ambicioso proyecto de recaudaci\u00f3n masiva de fondos que deber\u00eda ponerse en marcha en oto\u00f1o.<\/li>\n<\/ul>\n\n\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Hoy hace m\u00e1s de un a\u00f1o, estamos llenos de emoci\u00f3n, y nos gustar\u00eda expresar nuestra inmensa gratitud a todos los que han formado parte de este viaje. Vuestro apoyo ha sido incre\u00edblemente importante.<\/p>\n\n\n\n<p>Cada paso dado, cada esfuerzo realizado y cada conexi\u00f3n forjada han contribuido a la esperanza colectiva de un futuro mejor para nuestros hijos.<\/p>\n\n\n\n<p>Mientras reflexionamos sobre estos logros, nuestro equipo mantiene su compromiso. Es una celebraci\u00f3n de un a\u00f1o, pero tambi\u00e9n un recordatorio de que a\u00fan queda mucho por hacer. El viaje no termina aqu\u00ed, y todos estamos entusiasmados con lo que est\u00e1 por venir.<\/p>\n\n\n\n<p>Con la esperanza, la unidad y el progreso como gu\u00eda, Lasst uns MDS heilen sigue adelante.<\/p>","protected":false},"excerpt":{"rendered":"<p>Exactly a year ago, the \u00ab\u00a0Lasst uns MDS heilen \u2013 DupMECP2\u00a0\u00bb association came to life. The association&rsquo;s story began with Matteo&rsquo;s diagnosis in 2021. After three years of uncertainty and [&hellip;]<\/p>","protected":false},"author":1,"featured_media":18348,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[87],"tags":[],"class_list":["post-18346","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Celebrating One Year of Progress: Our Journey and Achievements - DupMECP2<\/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:\/\/dupmecp2.eu\/es\/nuestra-trayectoria-y-logros\/?lang=en\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Celebrating One Year of Progress: Our Journey and Achievements - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Exactly a year ago, the \u00ab\u00a0Lasst uns MDS heilen \u2013 DupMECP2\u00a0\u00bb association came to life. 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