{"id":3506,"date":"2020-08-30T20:36:00","date_gmt":"2020-08-31T01:36:00","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3506"},"modified":"2025-02-28T20:15:47","modified_gmt":"2025-02-28T20:15:47","slug":"girdie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/clinic-staff\/2020\/08\/30\/girdie\/","title":{"rendered":"Girdie:  LGMD El\u00e7imiz ve Maskotumuz"},"content":{"rendered":"<figure class=\"wp-block-image size-large\"><img decoding=\"async\" class=\"lazyload wp-image-3516\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271024%27%20height%3D%27576%27%20viewBox%3D%270%200%201024%20576%27%3E%3Crect%20width%3D%271024%27%20height%3D%27576%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2020\/08\/Girdie-Spotlight-Interview-Slide-1-1024x576.png\" alt=\"\" \/><\/figure>\r\n\r\n\r\n\r\n<h3 class=\"has-text-align-center has-black-color has-text-color wp-block-heading\"><strong>LGMD \"Spotlight R\u00f6portaj\u0131\"<\/strong><\/h3>\r\n\r\n\r\n\r\n<p class=\"has-black-color has-text-color\"><strong>LGMD B\u00fcy\u00fckel\u00e7isi<\/strong>:  Girdie<\/p>\r\n\r\n\r\n\r\n<p class=\"has-black-color has-text-color\"><strong>Ba\u011fl\u0131l\u0131k<\/strong>:           LGMD Fark\u0131ndal\u0131k Vakf\u0131, Inc.<\/p>\r\n\r\n\r\n\r\n<p class=\"has-black-color has-text-color\"><strong>ROL:<\/strong> \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Savunuculuk El\u00e7isi<\/p>\r\n\r\n\r\n\r\n<p class=\"has-black-color has-text-color\"><strong>UZUV-KIRDAK KAS DISTROFI\u0307SI\u0307 SAVUNUCULU\u011eU ALANINDA BI\u0307R KARI\u0307YER I\u0307ZLEMENI\u0307Z I\u0307\u00c7I\u0307N SI\u0307ZE NE I\u0307LHAM VERDI\u0307?<\/strong><\/p>\r\n\r\n\r\n\r\n<p>Bir LGMD LIMEmoji olarak bir grup harika, yetenekli, komik ve \u00e7ekici insanla tan\u0131\u015ft\u0131m. Dikkatimi \u00e7ektiler \u00e7\u00fcnk\u00fc hepsi limon ye\u015fili giyiyordu.  Hepsinin ortak bir y\u00f6n\u00fc oldu\u011funu \u00f6\u011frendim: hepsi nadir g\u00f6r\u00fclen n\u00f6rom\u00fcsk\u00fcler hastal\u0131k Limb-Girdle Muscular Dystrophy (LGMD) ile ya\u015f\u0131yor.  LGMD toplulu\u011funu birbirine ba\u011flamak i\u00e7in nas\u0131l birlikte \u00e7al\u0131\u015ft\u0131klar\u0131n\u0131 ke\u015ffettim.  LGMD ailelerini LGMD i\u00e7in tedavi geli\u015ftirmek \u00fczere \u00e7al\u0131\u015fan insanlarla bir araya getiriyorlar.\u00a0<\/p>\r\n\r\n\r\n\r\n<p class=\"has-black-color has-text-color\"><strong>LGMD FARKINDALIK EL\u00c7I\u0307SI\u0307 OLARAK HEDEFLERI\u0307NI\u0307Z NELER?<\/strong><\/p>\r\n\r\n\r\n\r\n<p>En yeni LGMD fark\u0131ndal\u0131k el\u00e7isi olarak, zeki ki\u015fili\u011fimi ba\u015fkalar\u0131na LGMD'yi \u00f6\u011fretmek i\u00e7in kullanaca\u011f\u0131m. \u00c7o\u011funlukla sosyal medya ve e\u011fitim faaliyetlerinde yer alaca\u011f\u0131m.  Bu, d\u00fcnyay\u0131 ke\u015ffedece\u011fim ve LGMD fark\u0131ndal\u0131\u011f\u0131n\u0131 yayaca\u011f\u0131m anlam\u0131na geliyor. <a href=\"http:\/\/www.lgmd-info.org\/tr\/\">www.lgmd-info.org<\/a> LGMD hakk\u0131ndaki ger\u00e7ekleri, mevcut kaynaklar\u0131 ve yakla\u015fan e\u011fitim etkinliklerini bulmak i\u00e7in.\u00a0\u00a0<\/p>\r\n\r\n\r\n\r\n<p class=\"has-black-color has-text-color\"><strong>SAVUNUCULUK \u00c7ALI\u015eMALARINIZ LGMD I\u0307LE YA\u015eAYANLARA NASIL YARDIMCI OLACAK?<\/strong><\/p>\r\n\r\n\r\n\r\n<p>Lezzet dolu ve e\u011flenceyi seven ruhumu k\u00fcresel yolculu\u011fuma ta\u015f\u0131yarak, LGMD fark\u0131ndal\u0131\u011f\u0131na ilgi uyand\u0131raca\u011f\u0131m.  LGMD'nin bir\u00e7ok t\u00fcr\u00fcne \u00e7are bulmak i\u00e7in ara\u015ft\u0131rmalar yap\u0131ld\u0131\u011f\u0131n\u0131 bilmelerini sa\u011flayaca\u011f\u0131m ve onlara umut verece\u011fim.  Fark\u0131ndal\u0131\u011f\u0131n g\u00fc\u00e7 oldu\u011funu ve g\u00fcc\u00fcn tedavileri, tedavileri getirdi\u011fini ve politikalar\u0131 de\u011fi\u015ftirdi\u011fini \u00f6\u011fretece\u011fim.   Birlikte daha g\u00fc\u00e7l\u00fc oldu\u011fumuzu g\u00f6sterece\u011fim.<\/p>\r\n\r\n\r\n\r\n<p class=\"has-black-color has-text-color\"><strong>LGMD FARKINDALIK KAMPANYASI HAKKINDA BA\u015eKALARININ NE BI\u0307LMESI\u0307NI\u0307 I\u0307STERSI\u0307NI\u0307Z?<\/strong><\/p>\r\n\r\n\r\n\r\n<p>Fark\u0131ndal\u0131k pek \u00e7ok farkl\u0131 \u015fekilde yap\u0131labilir ve tamamen e\u011flencelidir! Sadece d\u00fcnyan\u0131n d\u00f6rt bir yan\u0131ndan insanlarla tan\u0131\u015fmakla kalmaz, ayn\u0131 zamanda LGMD konusundaki anlay\u0131\u015flar\u0131n\u0131 geli\u015ftirmeleri i\u00e7in tohumlar ekersiniz.  Misket limonu gibi, fark\u0131ndal\u0131k da bir tohumdan tomurcu\u011fa ve s\u00fcper h\u0131zl\u0131 bir \u015fekilde tamamen ye\u015file d\u00f6n\u00fc\u015f\u00fcr!  Bu \u00e7ok tatmin edici.\u00a0\u00a0<\/p>\r\n\r\n\r\n\r\n<p class=\"has-black-color has-text-color\"><strong>LGMD FARKINDALIK EL\u00c7I\u0307SI\u0307 OLMANIN EN SEVDI\u0307\u011eI\u0307NI\u0307Z Y\u00d6N\u00dc NEDI\u0307R?<\/strong><\/p>\r\n\r\n\r\n\r\n<p>LGMD Fark\u0131ndal\u0131k El\u00e7isi Girdie olmak, bir LIMEmoji olarak hayat\u0131m\u0131 daha tatl\u0131 hale getirdi!  Limb-Girdle Muscular Dystrophy ile ya\u015fayan insanlara ve tedavi i\u00e7in \u00e7al\u0131\u015fanlara g\u00fc\u00e7 verme misyonunun bir par\u00e7as\u0131 olmaktan b\u00fcy\u00fck gurur duyuyorum. Ayr\u0131ca, haval\u0131 insanlarla foto\u011fraf \u00e7ektirmeyi seviyorum.<\/p>\r\n\r\n\r\n\r\n<p class=\"has-black-color has-text-color\"><strong>\"GIRDIE THE LIMEmoji\" VE \"GIRDIE THE LGMD AWARENESS AMBASSADOR\" OLMANIN EN B\u00dcY\u00dcK ZORLU\u011eU NED\u0130R?<\/strong><\/p>\r\n\r\n\r\n\r\n<p>Cidden en b\u00fcy\u00fck zorluk, t\u00fcm selfie'ler i\u00e7in kameran\u0131n haz\u0131r olmas\u0131.<\/p>\r\n\r\n\r\n\r\n<p class=\"has-black-color has-text-color\"><strong>SIZIN HAKKINIZDA BA\u015eKALARININ BILMESI GEREKEN BENZERSIZ BIR \u015eEY NEDIR?<\/strong><\/p>\r\n\r\n\r\n\r\n<p>Ad\u0131m Girdie (anlad\u0131n\u0131z m\u0131? Girdle?) ve LGMD Fark\u0131ndal\u0131\u011f\u0131n\u0131n resmi rengi kire\u00e7 ye\u015fili oldu\u011fu i\u00e7in, kendimi onlar\u0131n savunuculuk \u00e7abalar\u0131n\u0131n bir par\u00e7as\u0131 olmak zorunda hissettim. Do\u011fal misket limonu kimli\u011fimi mutfak zevkinin \u00f6tesine ta\u015f\u0131maya ve d\u00fcnyada bir fark yaratmaya karar verdim.\u00a0<\/p>\r\n\r\n\r\n\r\n\r\n\r\n<p>D\u00fcnyan\u0131n d\u00f6rt bir yan\u0131nda di\u011fer LGMD El\u00e7ileriyle tan\u0131\u015ft\u0131\u011f\u0131m yerleri payla\u015fmak i\u00e7in sab\u0131rs\u0131zlan\u0131yorum!\u00a0<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD &#8220;Spotlight Interview&#8221; LGMD Ambassador:\u00a0 Girdie Affliation:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 LGMD Awareness Foundation, [&hellip;]<\/p>","protected":false},"author":1,"featured_media":3516,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[105],"tags":[],"class_list":["post-3506","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-clinic-staff"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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