{"id":18368,"date":"2023-08-11T18:03:54","date_gmt":"2023-08-11T18:03:54","guid":{"rendered":"https:\/\/dupmecp2.eu\/feiern-eines-jahres-des-fortschritts-der-weg-und-die-erfolge-des-vereins\/"},"modified":"2023-08-11T19:59:25","modified_gmt":"2023-08-11T19:59:25","slug":"feiern-eines-jahres-des-fortschritts-der-weg-und-die-erfolge-des-vereins","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/en\/feiern-eines-jahres-des-fortschritts-der-weg-und-die-erfolge-des-vereins\/","title":{"rendered":"Feiern eines Jahres des Fortschritts: Der Weg und die Erfolge des Vereins"},"content":{"rendered":"<p>About a year ago, the \"Lasst uns MDS heilen - DupMECP2\" association came to life.<\/p>\n\n<p>The history of the Association began with Matteo's diagnosis in 2021. After three years of unhappiness and struggle on the part of his parents, David and Caroline Covini, the diagnosis of MECP2-Duplikationssyndrom was finally made and included a rare disease, of which only 260 cases have been registered worldwide.<\/p>\n\n<p>Durch Liebe und die Entschlie\u00dfung, f\u00fcr Kinder mit MDS einen Unterschied zu machen, vereint, begaben sich David und Caroline, beide Wissenschaftler, auf eine au\u00dfergew\u00f6hnliche Reise. Diese Reise f\u00fchrte zur Gr\u00fcndung von \"Lasst uns MDS heilen\", einer Organisation, die sich der Beschleunigung der Forschung, der Bereitstellung von Unterst\u00fctzung und der F\u00f6rderung der Einheit unter den Familien, die mit dieser Herausforderung konfrontiert sind, widmet.<\/p>\n\n<p>Im Mai 2022, als die Covinis \u00fcber den Kampf der Eltern gegen seltene Krankheiten berichten und die Medien auf MDS aufmerksam machen, kreuzen sich die Wege der Familien Susanne &amp; Gerald Molnar und Ana &amp; Boris Curic, die ebenfalls am MECP2-Genduplikationssyndrom erkrankt sind. With their strong motivation to contribute to the mission of their loved ones, these two families have joined the Vereins' Board and formed a strong and committed team.<\/p>\n\n<p>Dieses Datum markiert nicht nur die Gr\u00fcndung des Vereins, sondern feiert auch die unglaublichen Fortschritte im Kampf gegen das MECP2-Genduplikationssyndrom. In just one year, a number of significant achievements have been made:<\/p>\n\n<ul class=\"wp-block-list\">\n<li><strong>Ein starkes Team und weltweite Unterst\u00fctzung:<\/strong> The Vorstand des Vereins hat zusammengebracht mit wissenschaftlichen Experten, Familienmitgliedern und Freunden \u00fcber 130 Mitglieder aus mehr als 10 L\u00e4ndern. Together, we form a global network that is committed to change.<\/li>\n<\/ul>\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<ul class=\"wp-block-list\">\n<li><strong>Informative mehrsprachige Plattform:<\/strong> Der Verein hat mit <a href=\"https:\/\/dupmecp2.eu\/en\">www.dupmecp2.eu<\/a> eine Website ins Leben gerufen, die in mehreren Sprachen \u00fcber das MECP2-Duplikationssyndrom informiert. This platform provides information and updates to help families on their way.<\/li>\n<\/ul>\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<ul class=\"wp-block-list\">\n<li><strong>Events and fundraising:<\/strong> The first Online-Spendenaktion und -Veranstaltung des Vereins hat das Bewusstsein f\u00fcr die Krankheit gesch\u00e4rft und die Kraft der kollektiven Entschlossenheit demonstriert. Substantial funding has been earmarked, and an ambitious, comprehensive fundraising project is currently being planned and will be launched in the autumn.<\/li>\n<\/ul>\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<p>Now, after more than a year, we are full of emotion and we would like to express our great gratitude to all those who took part in this trip. Your support has been invaluable.<\/p>\n\n<p>Every step we have taken, every initiative we have taken and every link we have established has contributed to the hope of a better future for our children.<\/p>\n\n<p>While we look back on these achievements, our team's commitment remains strong. We're celebrating a new year, but it's also a reminder that there's more to come. The journey has not yet come to an end, and we're all looking forward to it.<\/p>\n\n<p>Hoffnung, Einigkeit und Fortschritt als Leitmotiv marschiert der Verein weiter.<\/p>","protected":false},"excerpt":{"rendered":"<p>Vor genau einem Jahr wurde der Verein \u00ab\u00a0Lasst uns MDS heilen &#8211; DupMECP2\u00a0\u00bb ins Leben gerufen. Die Geschichte des Vereins begann mit der Diagnose von Matteo im Jahr 2021. Nach [&hellip;]<\/p>","protected":false},"author":1,"featured_media":18350,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[57],"tags":[],"class_list":["post-18368","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-aktualitat"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Feiern eines Jahres des Fortschritts : Der Weg und die Erfolge des Vereins - 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\/en\/feiern-eines-jahres-des-fortschritts-der-weg-und-die-erfolge-des-vereins\/?lang=de\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Feiern eines Jahres des Fortschritts : Der Weg und die Erfolge des Vereins - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Vor genau einem Jahr wurde der Verein \u00ab\u00a0Lasst uns MDS heilen &#8211; DupMECP2\u00a0\u00bb ins Leben gerufen. 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