{"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":"nasza-podroz-i-osiagniecia","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/nasza-podroz-i-osiagniecia\/","title":{"rendered":"\u015awi\u0119tujemy rok post\u0119p\u00f3w: nasza podr\u00f3\u017c i osi\u0105gni\u0119cia"},"content":{"rendered":"<p>Dok\u0142adnie rok temu powsta\u0142o stowarzyszenie \"Lasst uns MDS heilen - DupMECP2\".<\/p>\n\n\n\n<p>Historia stowarzyszenia rozpocz\u0119\u0142a si\u0119 wraz z diagnoz\u0105 Matteo w 2021 roku. Po trzech latach niepewno\u015bci i walki jego rodzic\u00f3w, Davida i Caroline Covini, w ko\u0144cu postawiono diagnoz\u0119 zespo\u0142u duplikacji MECP2, ujawniaj\u0105c chorob\u0119 tak rzadk\u0105, \u017ce na ca\u0142ym \u015bwiecie zarejestrowano tylko 260 przypadk\u00f3w.<\/p>\n\n\n\n<p>Po\u0142\u0105czeni mi\u0142o\u015bci\u0105 i determinacj\u0105, by co\u015b zmieni\u0107 dla dzieci z MDS, David i Caroline, oboje naukowcy, wyruszyli w niezwyk\u0142\u0105 podr\u00f3\u017c. Podr\u00f3\u017c ta doprowadzi\u0142a do powstania stowarzyszenia \"Lasst uns MDS heilen\", kt\u00f3rego celem jest przyspieszenie bada\u0144, zapewnienie wsparcia i budowanie jedno\u015bci w\u015br\u00f3d rodzin borykaj\u0105cych si\u0119 z tym wyzwaniem.<\/p>\n\n\n\n<p>W maju 2022 r., podkre\u015blaj\u0105c zmagania rodzic\u00f3w z rzadkimi chorobami i podnosz\u0105c \u015bwiadomo\u015b\u0107 na temat MDS w mediach, Covini skrzy\u017cowa\u0142 \u015bcie\u017cki z rodzinami Susanne i Geralda Molnar\u00f3w oraz Any i Borisa Curic\u00f3w, bezpo\u015brednio dotkni\u0119tych zespo\u0142em duplikacji MECP2. Maj\u0105c siln\u0105 motywacj\u0119, aby przyczyni\u0107 si\u0119 do wysi\u0142k\u00f3w na rzecz swoich syn\u00f3w, te 2 rodziny do\u0142\u0105czy\u0142y do zarz\u0105du stowarzyszenia, tworz\u0105c pot\u0119\u017cny i oddany zesp\u00f3\u0142.<\/p>\n\n\n\n<p>Data ta nie tylko oznacza utworzenie stowarzyszenia, ale tak\u017ce upami\u0119tnia niesamowite wysi\u0142ki podj\u0119te w walce z zespo\u0142em duplikacji genu MECP2. W ci\u0105gu zaledwie jednego roku uda\u0142o si\u0119 zrealizowa\u0107 niezwyk\u0142e osi\u0105gni\u0119cia:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Silny zesp\u00f3\u0142 i globalne wsparcie<\/strong>Zarz\u0105d stowarzyszenia, wraz z ekspertami naukowymi, cz\u0142onkami rodziny i przyjaci\u00f3\u0142mi, zgromadzi\u0142 ponad 130 cz\u0142onk\u00f3w z ponad 10 kraj\u00f3w. Razem tworzymy globaln\u0105 sie\u0107 zaanga\u017cowan\u0105 we 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>Informacyjna platforma wieloj\u0119zyczna<\/strong>Stowarzyszenie uruchomi\u0142o <a href=\"https:\/\/dupmecp2.eu\/pl\">www.dupmecp2.eu<\/a>strona internetowa oferuj\u0105ca informacje w wielu j\u0119zykach na temat zespo\u0142u duplikacji MECP2. Platforma ta s\u0142u\u017cy jako centrum wiedzy i aktualizacji wspieraj\u0105cych rodziny w ich podr\u00f3\u017cy.<\/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 pozyskiwanie funduszy<\/strong>Pierwsza internetowa zbi\u00f3rka funduszy i wydarzenie stowarzyszenia podnios\u0142y \u015bwiadomo\u015b\u0107 i pokaza\u0142y si\u0142\u0119 zbiorowej determinacji. Otrzymano hojne darowizny, a ambitny, masowy projekt zbierania funduszy jest obecnie planowany i powinien 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>Dzi\u015b, ponad rok temu, jeste\u015bmy pe\u0142ni emocji i chcieliby\u015bmy wyrazi\u0107 nasz\u0105 ogromn\u0105 wdzi\u0119czno\u015b\u0107 wszystkim, kt\u00f3rzy byli cz\u0119\u015bci\u0105 tej podr\u00f3\u017cy. Wasze wsparcie by\u0142o niezwykle wa\u017cne.<\/p>\n\n\n\n<p>Ka\u017cdy podj\u0119ty krok, ka\u017cdy podj\u0119ty wysi\u0142ek i ka\u017cde nawi\u0105zane po\u0142\u0105czenie przyczyni\u0142o si\u0119 do wsp\u00f3lnej nadziei na lepsz\u0105 przysz\u0142o\u015b\u0107 dla naszych dzieci.<\/p>\n\n\n\n<p>Zastanawiaj\u0105c si\u0119 nad tymi osi\u0105gni\u0119ciami, nasz zesp\u00f3\u0142 pozostaje oddany swojemu zaanga\u017cowaniu. To \u015bwi\u0119towanie jednego roku, ale tak\u017ce przypomnienie, \u017ce jest jeszcze wiele do zrobienia. Podr\u00f3\u017c nie ko\u0144czy si\u0119 tutaj i wszyscy jeste\u015bmy podekscytowani tym, co nadejdzie.<\/p>\n\n\n\n<p>Z nadziej\u0105, jedno\u015bci\u0105 i post\u0119pem jako \u015bwiat\u0142ami przewodnimi, Lasst uns MDS heilen maszeruje dalej.<\/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\/pl\/nasza-podroz-i-osiagniecia\/?lang=en\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\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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