{"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":"il-nostro-viaggio-e-i-nostri-risultati","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/it\/il-nostro-viaggio-e-i-nostri-risultati\/","title":{"rendered":"Celebrazione di un anno di progressi: il nostro viaggio e i nostri risultati"},"content":{"rendered":"<p>Esattamente un anno fa \u00e8 nata l'associazione \"Lasst uns MDS heilen - DupMECP2\".<\/p>\n\n\n\n<p>La storia dell'associazione \u00e8 iniziata con la diagnosi di Matteo nel 2021. Dopo tre anni di incertezza e di lotta per i suoi genitori, David e Caroline Covini, \u00e8 stata finalmente fatta la diagnosi di sindrome da duplicazione MECP2, rivelando una malattia cos\u00ec rara che ci sono solo 260 casi registrati in tutto il mondo.<\/p>\n\n\n\n<p>Uniti dall'amore e dalla determinazione di fare la differenza per i bambini affetti da MDS, David e Caroline, entrambi scienziati, hanno intrapreso un viaggio straordinario. Questo viaggio ha portato alla creazione di \"Lasst uns MDS heilen\", un'associazione dedicata ad accelerare la ricerca, fornire sostegno e promuovere l'unit\u00e0 tra le famiglie che affrontano questa sfida.<\/p>\n\n\n\n<p>Nel maggio del 2022, mentre mettevano in luce le lotte dei genitori contro le malattie rare e sensibilizzavano i media sulle MDS, i Covini hanno incrociato le famiglie Susanne &amp; Gerald Molnar e Ana &amp; Boris Curic, direttamente colpite dalla sindrome da duplicazione della MECP2. Con la forte motivazione di contribuire agli sforzi per i loro figli, queste due famiglie sono entrate a far parte del consiglio direttivo dell'associazione, formando un team formidabile e dedicato.<\/p>\n\n\n\n<p>Questa data non solo segna la creazione dell'associazione, ma celebra anche gli incredibili sforzi compiuti nella lotta contro la sindrome da duplicazione del gene MECP2. In un solo anno sono stati raggiunti risultati notevoli:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Un team forte e un supporto globale<\/strong>Il consiglio direttivo dell'associazione, insieme a esperti scientifici, familiari e amici, ha riunito oltre 130 membri provenienti da pi\u00f9 di 10 Paesi. Insieme, formiamo una rete globale impegnata a cambiare le cose.<\/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>Piattaforma informativa multilingue<\/strong>L'associazione ha lanciato <a href=\"https:\/\/dupmecp2.eu\/it\">www.dupmecp2.eu<\/a>un sito web che offre informazioni in pi\u00f9 lingue sulla sindrome da duplicazione MECP2. Questa piattaforma funge da centro di conoscenza e aggiornamento per sostenere le famiglie nel loro percorso.<\/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>Eventi e raccolta fondi<\/strong>Il primo evento di raccolta fondi online dell'associazione ha sensibilizzato l'opinione pubblica e mostrato il potere della determinazione collettiva. Sono state ricevute generose donazioni e si sta pianificando un ambizioso progetto di raccolta fondi di massa che dovrebbe essere lanciato entro l'autunno.<\/li>\n<\/ul>\n\n\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Oggi, pi\u00f9 di un anno fa, siamo pieni di emozioni e desideriamo esprimere la nostra immensa gratitudine a tutti coloro che hanno partecipato a questo viaggio. Il vostro sostegno \u00e8 stato incredibilmente importante.<\/p>\n\n\n\n<p>Ogni passo compiuto, ogni sforzo fatto e ogni legame creato ha contribuito alla speranza collettiva di un futuro pi\u00f9 luminoso per i nostri figli.<\/p>\n\n\n\n<p>Riflettendo su questi risultati, il nostro team rimane fedele al proprio impegno. \u00c8 la celebrazione di un anno, ma \u00e8 anche un promemoria del fatto che c'\u00e8 ancora molto da fare. Il viaggio non finisce qui e siamo tutti entusiasti di ci\u00f2 che verr\u00e0.<\/p>\n\n\n\n<p>Con la speranza, l'unit\u00e0 e il progresso come luci guida, Lasst uns MDS heilen prosegue la sua marcia.<\/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\/it\/il-nostro-viaggio-e-i-nostri-risultati\/?lang=en\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\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. The association&rsquo;s story began with Matteo&rsquo;s diagnosis in 2021. After three years of uncertainty and [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/dupmecp2.eu\/it\/il-nostro-viaggio-e-i-nostri-risultati\/?lang=en\" \/>\n<meta property=\"og:site_name\" content=\"DupMECP2\" \/>\n<meta property=\"article:published_time\" content=\"2023-08-11T18:03:54+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2023-08-11T19:59:24+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2023\/08\/DupMECP2_one-year-anniversary.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1163\" \/>\n\t<meta property=\"og:image:height\" content=\"1707\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Caroline\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Scritto da\" \/>\n\t<meta name=\"twitter:data1\" content=\"Caroline\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tempo di lettura stimato\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minuti\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en#article\",\"isPartOf\":{\"@id\":\"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en\"},\"author\":{\"name\":\"Caroline\",\"@id\":\"https:\/\/dupmecp2.eu\/#\/schema\/person\/b41e8cbba153cd974ee340386af279ee\"},\"headline\":\"Celebrating One Year of Progress: Our Journey and Achievements\",\"datePublished\":\"2023-08-11T18:03:54+00:00\",\"dateModified\":\"2023-08-11T19:59:24+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en\"},\"wordCount\":439,\"publisher\":{\"@id\":\"https:\/\/dupmecp2.eu\/#organization\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en#primaryimage\"},\"thumbnailUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2023\/08\/DupMECP2_one-year-anniversary.jpg\",\"articleSection\":[\"News\"],\"inLanguage\":\"it-IT\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en\",\"url\":\"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en\",\"name\":\"Celebrating One Year of Progress: Our Journey and Achievements - DupMECP2\",\"isPartOf\":{\"@id\":\"https:\/\/dupmecp2.eu\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en#primaryimage\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en#primaryimage\"},\"thumbnailUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2023\/08\/DupMECP2_one-year-anniversary.jpg\",\"datePublished\":\"2023-08-11T18:03:54+00:00\",\"dateModified\":\"2023-08-11T19:59:24+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en#breadcrumb\"},\"inLanguage\":\"it-IT\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"it-IT\",\"@id\":\"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en#primaryimage\",\"url\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2023\/08\/DupMECP2_one-year-anniversary.jpg\",\"contentUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2023\/08\/DupMECP2_one-year-anniversary.jpg\",\"width\":1163,\"height\":1707},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Accueil\",\"item\":\"https:\/\/dupmecp2.eu\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"News\",\"item\":\"https:\/\/dupmecp2.eu\/category\/news\/?lang=en\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"Celebrating One Year of Progress: Our Journey and Achievements\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/dupmecp2.eu\/#website\",\"url\":\"https:\/\/dupmecp2.eu\/\",\"name\":\"DupMECP2\",\"description\":\"EU\",\"publisher\":{\"@id\":\"https:\/\/dupmecp2.eu\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/dupmecp2.eu\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"it-IT\"},{\"@type\":\"Organization\",\"@id\":\"https:\/\/dupmecp2.eu\/#organization\",\"name\":\"DupMECP2\",\"url\":\"https:\/\/dupmecp2.eu\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"it-IT\",\"@id\":\"https:\/\/dupmecp2.eu\/#\/schema\/logo\/image\/\",\"url\":\"\",\"contentUrl\":\"\",\"caption\":\"DupMECP2\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/#\/schema\/logo\/image\/\"}},{\"@type\":\"Person\",\"@id\":\"https:\/\/dupmecp2.eu\/#\/schema\/person\/b41e8cbba153cd974ee340386af279ee\",\"name\":\"Caroline\",\"sameAs\":[\"https:\/\/dupmecp2.eu\"],\"url\":\"https:\/\/dupmecp2.eu\/it\/author\/417a2385dc37aa45\/\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Celebrazione di un anno di progressi: il nostro viaggio e i nostri risultati - DupMECP2","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/dupmecp2.eu\/it\/il-nostro-viaggio-e-i-nostri-risultati\/?lang=en","og_locale":"it_IT","og_type":"article","og_title":"Celebrating One Year of Progress: Our Journey and Achievements - DupMECP2","og_description":"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;]","og_url":"https:\/\/dupmecp2.eu\/it\/il-nostro-viaggio-e-i-nostri-risultati\/?lang=en","og_site_name":"DupMECP2","article_published_time":"2023-08-11T18:03:54+00:00","article_modified_time":"2023-08-11T19:59:24+00:00","og_image":[{"width":1163,"height":1707,"url":"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2023\/08\/DupMECP2_one-year-anniversary.jpg","type":"image\/jpeg"}],"author":"Caroline","twitter_card":"summary_large_image","twitter_misc":{"Scritto da":"Caroline","Tempo di lettura stimato":"2 minuti"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en#article","isPartOf":{"@id":"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en"},"author":{"name":"Caroline","@id":"https:\/\/dupmecp2.eu\/#\/schema\/person\/b41e8cbba153cd974ee340386af279ee"},"headline":"Celebrating One Year of Progress: Our Journey and Achievements","datePublished":"2023-08-11T18:03:54+00:00","dateModified":"2023-08-11T19:59:24+00:00","mainEntityOfPage":{"@id":"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en"},"wordCount":439,"publisher":{"@id":"https:\/\/dupmecp2.eu\/#organization"},"image":{"@id":"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en#primaryimage"},"thumbnailUrl":"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2023\/08\/DupMECP2_one-year-anniversary.jpg","articleSection":["News"],"inLanguage":"it-IT"},{"@type":"WebPage","@id":"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en","url":"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en","name":"Celebrazione di un anno di progressi: il nostro viaggio e i nostri risultati - DupMECP2","isPartOf":{"@id":"https:\/\/dupmecp2.eu\/#website"},"primaryImageOfPage":{"@id":"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en#primaryimage"},"image":{"@id":"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en#primaryimage"},"thumbnailUrl":"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2023\/08\/DupMECP2_one-year-anniversary.jpg","datePublished":"2023-08-11T18:03:54+00:00","dateModified":"2023-08-11T19:59:24+00:00","breadcrumb":{"@id":"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en#breadcrumb"},"inLanguage":"it-IT","potentialAction":[{"@type":"ReadAction","target":["https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en"]}]},{"@type":"ImageObject","inLanguage":"it-IT","@id":"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en#primaryimage","url":"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2023\/08\/DupMECP2_one-year-anniversary.jpg","contentUrl":"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2023\/08\/DupMECP2_one-year-anniversary.jpg","width":1163,"height":1707},{"@type":"BreadcrumbList","@id":"https:\/\/dupmecp2.eu\/our-journey-and-achievements\/?lang=en#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Accueil","item":"https:\/\/dupmecp2.eu\/"},{"@type":"ListItem","position":2,"name":"News","item":"https:\/\/dupmecp2.eu\/category\/news\/?lang=en"},{"@type":"ListItem","position":3,"name":"Celebrating One Year of Progress: Our Journey and Achievements"}]},{"@type":"WebSite","@id":"https:\/\/dupmecp2.eu\/#website","url":"https:\/\/dupmecp2.eu\/","name":"DupMECP2","description":"UE","publisher":{"@id":"https:\/\/dupmecp2.eu\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/dupmecp2.eu\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"it-IT"},{"@type":"Organization","@id":"https:\/\/dupmecp2.eu\/#organization","name":"DupMECP2","url":"https:\/\/dupmecp2.eu\/","logo":{"@type":"ImageObject","inLanguage":"it-IT","@id":"https:\/\/dupmecp2.eu\/#\/schema\/logo\/image\/","url":"","contentUrl":"","caption":"DupMECP2"},"image":{"@id":"https:\/\/dupmecp2.eu\/#\/schema\/logo\/image\/"}},{"@type":"Person","@id":"https:\/\/dupmecp2.eu\/#\/schema\/person\/b41e8cbba153cd974ee340386af279ee","name":"Caroline","sameAs":["https:\/\/dupmecp2.eu"],"url":"https:\/\/dupmecp2.eu\/it\/author\/417a2385dc37aa45\/"}]}},"_links":{"self":[{"href":"https:\/\/dupmecp2.eu\/it\/wp-json\/wp\/v2\/posts\/18346","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dupmecp2.eu\/it\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dupmecp2.eu\/it\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dupmecp2.eu\/it\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/dupmecp2.eu\/it\/wp-json\/wp\/v2\/comments?post=18346"}],"version-history":[{"count":0,"href":"https:\/\/dupmecp2.eu\/it\/wp-json\/wp\/v2\/posts\/18346\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/dupmecp2.eu\/it\/wp-json\/wp\/v2\/media\/18348"}],"wp:attachment":[{"href":"https:\/\/dupmecp2.eu\/it\/wp-json\/wp\/v2\/media?parent=18346"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dupmecp2.eu\/it\/wp-json\/wp\/v2\/categories?post=18346"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dupmecp2.eu\/it\/wp-json\/wp\/v2\/tags?post=18346"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}