{"id":18357,"date":"2023-08-11T18:03:54","date_gmt":"2023-08-11T18:03:54","guid":{"rendered":"https:\/\/dupmecp2.eu\/celebration-dune-annee-de-progres-le-parcours-et-les-accomplissements-de-lassociation\/"},"modified":"2023-08-11T19:26:59","modified_gmt":"2023-08-11T19:26:59","slug":"uroczystosc-z-okazji-rocznicy-postepow-historia-i-osiagniecia-stowarzyszenia","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/uroczystosc-z-okazji-rocznicy-postepow-historia-i-osiagniecia-stowarzyszenia\/","title":{"rendered":"\u015awi\u0119tujemy rok post\u0119p\u00f3w: historia i osi\u0105gni\u0119cia stowarzyszenia"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Dok\u0142adnie rok temu powsta\u0142o stowarzyszenie \u201eLasst uns MDS heilen \u2013 DupMECP2\u201d.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Historia stowarzyszenia rozpocz\u0119\u0142a si\u0119 wraz z postawieniem diagnozy u Matteo w 2021 roku. Po trzech latach niepewno\u015bci i zmaga\u0144 ze strony jego rodzic\u00f3w, Davida i Caroline Covini, w ko\u0144cu postawiono diagnoz\u0119 zespo\u0142u duplikacji genu MECP2, ujawniaj\u0105c rzadk\u0105 chorob\u0119, kt\u00f3rej odnotowano zaledwie 260 przypadk\u00f3w na ca\u0142ym \u015bwiecie.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Zjednoczeni mi\u0142o\u015bci\u0105 i determinacj\u0105, by zmieni\u0107 sytuacj\u0119 dzieci cierpi\u0105cych na MDS, David i Caroline \u2013 oboje naukowcy \u2013 wyruszyli w niezwyk\u0142\u0105 podr\u00f3\u017c. Podr\u00f3\u017c ta zaowocowa\u0142a powstaniem stowarzyszenia \u201eLasst uns MDS heilen\u201d, kt\u00f3rego celem jest przyspieszenie bada\u0144, zapewnienie wsparcia oraz budowanie jedno\u015bci w\u015br\u00f3d rodzin borykaj\u0105cych si\u0119 z tym wyzwaniem.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">W maju 2022 roku, kiedy to rodzina Covini opowiada\u0142a o zmaganiach rodzic\u00f3w z rzadkimi chorobami i zwraca\u0142a uwag\u0119 medi\u00f3w na MDS, ich drogi skrzy\u017cowa\u0142y si\u0119 z rodzinami Molnar i Curic, kt\u00f3re r\u00f3wnie\u017c borykaj\u0105 si\u0119 z zespo\u0142em duplikacji genu MECP2. Kierowane siln\u0105 motywacj\u0105, by wesprze\u0107 dzia\u0142ania na rzecz swoich syn\u00f3w, obie rodziny do\u0142\u0105czy\u0142y do zarz\u0105du stowarzyszenia, tworz\u0105c w ten spos\u00f3b silny i zdeterminowany zesp\u00f3\u0142.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Data ta nie tylko oznacza powstanie stowarzyszenia, ale jest r\u00f3wnie\u017c wyrazem uznania dla niesamowitych wysi\u0142k\u00f3w w\u0142o\u017conych w walk\u0119 z zespo\u0142em duplikacji genu MECP2. W ci\u0105gu zaledwie jednego roku zrealizowano szereg niezwyk\u0142ych dzia\u0142a\u0144:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Solidny zesp\u00f3\u0142 i wsparcie na ca\u0142ym \u015bwiecie:<\/strong> Zarz\u0105d stowarzyszenia, a tak\u017ce eksperci naukowi, cz\u0142onkowie rodzin i przyjaciele zgromadzili ponad 130 cz\u0142onk\u00f3w z ponad 10 kraj\u00f3w. Razem tworzymy globaln\u0105 sie\u0107, kt\u00f3rej celem jest wprowadzanie zmian.<\/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>Wieloj\u0119zyczna platforma informacyjna:<\/strong> Stowarzyszenie uruchomi\u0142o <a href=\"https:\/\/dupmecp2.eu\/pl\">www.dupmecp2.eu<\/a>, strona internetowa zawieraj\u0105ca informacje w wielu j\u0119zykach na temat zespo\u0142u duplikacji genu MECP2. Platforma ta s\u0142u\u017cy gromadzeniu wiedzy i dzieleniu si\u0119 nowymi informacjami, aby wspiera\u0107 rodziny w ich codziennym \u017cyciu.<\/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>Wydarzenia i zbi\u00f3rki funduszy:<\/strong> Pierwsza zbi\u00f3rka funduszy online oraz pierwsze wydarzenie pozwoli\u0142y zwi\u0119kszy\u0107 \u015bwiadomo\u015b\u0107 spo\u0142eczn\u0105 i pokaza\u0107 si\u0142\u0119 solidarno\u015bci. Otrzymano hojne darowizny, a obecnie trwaj\u0105 przygotowania do ambitnego projektu zakrojonej na szerok\u0105 skal\u0119 zbi\u00f3rki funduszy, kt\u00f3ry ma zosta\u0107 uruchomiony jesieni\u0105.<\/li>\n<\/ul>\n\n\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">Dzisiaj, bardziej ni\u017c rok temu, ogarnia nas wzruszenie i pragniemy wyrazi\u0107 nasz\u0105 ogromn\u0105 wdzi\u0119czno\u015b\u0107 wszystkim, kt\u00f3rzy wzi\u0119li udzia\u0142 w tej przygodzie. Wasze wsparcie jest dla nas niezwykle wa\u017cne.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Ka\u017cdy zrobiony krok, ka\u017cdy podj\u0119ty wysi\u0142ek i ka\u017cda nawi\u0105zana wi\u0119\u017a przyczyni\u0142y si\u0119 do wzmocnienia nadziei na szcz\u0119\u015bliwsz\u0105 przysz\u0142o\u015b\u0107 dla naszych dzieci.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Wspominaj\u0105c te osi\u0105gni\u0119cia, nasz zesp\u00f3\u0142 pozostaje wierny swoim zobowi\u0105zaniom. To \u015bwi\u0119towanie minionego roku, ale tak\u017ce przypomnienie, \u017ce przed nami jeszcze wiele do zrobienia. Ta podr\u00f3\u017c nie ko\u0144czy si\u0119 tutaj i wszyscy z niecierpliwo\u015bci\u0105 czekamy na to, co nas czeka.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Kieruj\u0105c si\u0119 nadziej\u0105, jedno\u015bci\u0105 i post\u0119pem jako g\u0142\u00f3wnymi si\u0142ami nap\u0119dowymi, stowarzyszenie \u201eLasst uns MDS heilen\u201d idzie naprz\u00f3d.<\/p>","protected":false},"excerpt":{"rendered":"<p>Il y a exactement un an, l&rsquo;association \u00ab\u00a0Lasst uns MDS heilen &#8211; DupMECP2\u00a0\u00bb a vu le jour. L&rsquo;histoire de l&rsquo;association a commenc\u00e9 avec le diagnostic de Matteo en 2021. Apr\u00e8s [&hellip;]<\/p>","protected":false},"author":1,"featured_media":18349,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-18357","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualite"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>C\u00e9l\u00e9bration d&#039;une ann\u00e9e de progr\u00e8s : Le parcours et les accomplissements de l&#039;association - 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\/pl\/uroczystosc-z-okazji-rocznicy-postepow-historia-i-osiagniecia-stowarzyszenia\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"C\u00e9l\u00e9bration d&#039;une ann\u00e9e de progr\u00e8s : Le parcours et les accomplissements de l&#039;association - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Il y a exactement un an, l&rsquo;association \u00ab\u00a0Lasst uns MDS heilen &#8211; DupMECP2\u00a0\u00bb a vu le jour. 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