{"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":"unsere-reise-und-errungenschaften","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/de\/unsere-reise-und-errungenschaften\/","title":{"rendered":"Celebrating One Year of Progress: Our Journey and Achievements (Ein Jahr des Fortschritts: Unsere Reise und Errungenschaften)"},"content":{"rendered":"<p>Genau ein Jahr zuvor wurde der Verein \"Lasst uns MDS heilen - DupMECP2\" ins Leben gerufen.<\/p>\n\n\n\n<p>Die Geschichte des Vereins begann mit Matteos Diagnose im Jahr 2021. Nach drei Jahren der Ungewissheit und des Kampfes f\u00fcr seine Eltern, David und Caroline Covini, wurde schlie\u00dflich die Diagnose MECP2-Duplikationssyndrom gestellt, die eine so seltene Krankheit enth\u00fcllte, dass es weltweit nur 260 registrierte F\u00e4lle gibt.<\/p>\n\n\n\n<p>Vereint durch die Liebe und die Entschlossenheit, f\u00fcr Kinder mit MDS einen Unterschied zu machen, 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\", einem Verein, der sich der Beschleunigung der Forschung, der Bereitstellung von Unterst\u00fctzung und der F\u00f6rderung der Einheit unter Familien, die diese Herausforderung bew\u00e4ltigen, widmet.<\/p>\n\n\n\n<p>Im Mai 2022, als die Covini-Gruppe die K\u00e4mpfe der Eltern mit seltenen Krankheiten hervorhob und das Bewusstsein f\u00fcr MDS in den Medien sch\u00e4rfte, kreuzte sie den Weg mit den Familien Susanne &amp; Gerald Molnar und Ana &amp; Boris Curic, die direkt vom MECP2-Duplikationssyndrom betroffen sind. Mit der starken Motivation, sich f\u00fcr ihre S\u00f6hne einzusetzen, traten diese beiden Familien dem Vorstand des Vereins bei und bildeten ein gro\u00dfartiges und engagiertes Team.<\/p>\n\n\n\n<p>Dieses Datum markiert nicht nur die Gr\u00fcndung der Vereinigung, sondern feiert auch die unglaublichen Anstrengungen, die im Kampf gegen das MECP2-Genduplikationssyndrom unternommen wurden. In nur einem Jahr wurden bemerkenswerte Erfolge erzielt:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>A Strong Team and Global Support<\/strong>The association's board, along with scientific experts, family members, friends, have been gathering over 130 members from more than 10 countries. Gemeinsam bilden wir ein globales Netzwerk, das sich dem Ziel verschrieben hat, einen Wandel zu bewirken.<\/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>Informative Multilingual Platform<\/strong>: The association launched <a href=\"https:\/\/dupmecp2.eu\/de\">www.dupmecp2.eu<\/a>eine Website, die in mehreren Sprachen Informationen \u00fcber das MECP2 Duplication Syndrome bietet. Diese Plattform dient als Knotenpunkt f\u00fcr Wissen und Updates, um Familien auf ihrem Weg zu unterst\u00fctzen.<\/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>Veranstaltungen und Fundraising<\/strong>The association's first online fundraising and event raised awareness and showcased the power of collective determination. Generous donations have received, and an ambitious massive fund-raising project is currently being planned and should be launched by autumn.<\/li>\n<\/ul>\n\n\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Heute vor mehr als einem Jahr sind wir voller Emotionen, und wir m\u00f6chten allen, die Teil dieser Reise waren, unsere gro\u00dfe Dankbarkeit ausdr\u00fccken. Ihre Unterst\u00fctzung war unglaublich wichtig.<\/p>\n\n\n\n<p>Jeder Schritt, den wir getan haben, jede Anstrengung, die wir unternommen haben, und jede Verbindung, die wir hergestellt haben, hat zu der kollektiven Hoffnung auf eine strahlende Zukunft f\u00fcr unsere Kinder beigetragen.<\/p>\n\n\n\n<p>W\u00e4hrend wir auf diese Erfolge zur\u00fcckblicken, bleibt unser Team seinem Engagement verpflichtet. Es ist eine Feier eines Jahres, aber auch eine Erinnerung daran, dass es noch mehr zu tun gibt. Die Reise endet hier nicht, und wir sind alle gespannt auf das, was noch kommen wird.<\/p>\n\n\n\n<p>With hope, unity, and progress as guiding lights, Lasst uns MDS heilen marches onward.<\/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\/de\/unsere-reise-und-errungenschaften\/?lang=en\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\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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