{"id":2259,"date":"2018-09-21T11:47:18","date_gmt":"2018-09-21T16:47:18","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2259"},"modified":"2018-09-21T11:47:18","modified_gmt":"2018-09-21T16:47:18","slug":"beyond-labels-limitations","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/lgmd2a\/2018\/09\/21\/beyond-labels-limitations\/","title":{"rendered":"ORGAN\u0130ZASYON: Etiketlerin ve S\u0131n\u0131rlamalar\u0131n \u00d6tesinde"},"content":{"rendered":"<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27960%27%20height%3D%27720%27%20viewBox%3D%270%200%20960%20720%27%3E%3Crect%20width%3D%27960%27%20height%3D%27720%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/09\/Beyond-Labels.png\" alt=\"\" class=\"lazyload wp-image-2260\"\/><\/figure>\n\n\n<p><strong>KURULU\u015eUN ADI<\/strong>:          Etiketlerin ve S\u0131n\u0131rlamalar\u0131n \u00d6tesinde\u00a0<\/p>\n<p><strong>WEB S\u0130TES\u0130:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0<a href=\"http:\/\/www.BeyondLabelsLimitations.com\">www.BeyondLabelsLimitations.com<\/a><\/p>\n<p><strong>FACEBOOK:\u00a0\u00a0 \u00a0\u00a0<\/strong><a href=\"https:\/\/www.facebook.com\/groups\/29111827568\/\">https:\/\/www.facebook.com\/groups\/29111827568\/<\/a><\/p>\n<p><strong>YouTube Kanal\u0131:\u00a0 \u00a0<\/strong><a href=\"https:\/\/www.youtube.com\/user\/John71377\">www.youtube.com\/user\/John71377<\/a><\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>KURULU\u015eUNUZ HANGI\u0307 LGMD ALT TI\u0307PI\u0307NE ODAKLANIYOR:\u00a0 <\/strong><\/p>\n<p>LGMD2A \/ Kalpainopati<\/p>\n<p><strong>BIR ALT T\u00dcRE ODAKLANIRSANIZ, BIR KAYIT DEFTERI VAR MI VE HASTALAR NASIL KATILABILIR? <\/strong><\/p>\n<p><a href=\"http:\/\/www.curecalpain3.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">Calpain 3'\u00fc \u0130yile\u015ftirme Koalisyonu<\/a> korur <a href=\"http:\/\/www.lgmd2a.org\" target=\"_blank\" rel=\"noopener noreferrer\">K\u00fcresel LGMD2A Hasta Kay\u0131tlar\u0131<\/a> \u00e7evrimi\u00e7i olarak eri\u015filebilir.<\/p>\n<p><strong>KURULU\u015eUNUZ KAR AMACI G\u00dcTMEYEN BIR KURULU\u015e MU?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Evet, biz 501(c)3 kar amac\u0131 g\u00fctmeyen bir kurulu\u015fuz.<\/p>\n<p><strong>KURULU\u015eUNUZUN KURULMASINA NE I\u0307LHAM VERDI\u0307?<\/strong>:<\/p>\n<p>Ben, John C. Graybill II, BL&amp;L'yi iki nedenle kurdum. \u0130lk neden ara\u015ft\u0131rma i\u00e7in para toplamakt\u0131. 1995'ten 2006'ya kadar her y\u0131l n\u00f6rolo\u011fumu g\u00f6rmeye giderdim ve bana tedavi konusunda hi\u00e7bir geli\u015fme olmad\u0131\u011f\u0131n\u0131 s\u00f6ylerdi. Ben bunu de\u011fi\u015ftirmek istedim. BL&amp;L'yi kurmam\u0131n ikinci nedeni videolar\u0131m arac\u0131l\u0131\u011f\u0131yla fark\u0131ndal\u0131k yaratmakt\u0131. O zamanlar LGMD'nin ilerleyi\u015fini kaydeden kimse yoktu ve ba\u011flant\u0131 kurabilece\u011fim kimse de yoktu. Videolar \u00e7ekerek ba\u015fkalar\u0131n\u0131n benimle ba\u011flant\u0131 kurmas\u0131 ve yaln\u0131z hissetmemesi i\u00e7in bir kap\u0131 a\u00e7t\u0131m.  Videolar\u0131m \u015fu adreste mevcut <a href=\"https:\/\/www.youtube.com\/user\/John71377\" target=\"_blank\" rel=\"noopener noreferrer\">YouTube<\/a><\/p>\n<p><strong>KURULU\u015eUNUZUN MISYONU NEDIR?<\/strong><\/p>\n<p>LGMD2A i\u00e7in titiz bilimsel ara\u015ft\u0131rmalar\u0131 desteklemek ve ki\u015fisel deneyimlerimden yola \u00e7\u0131karak ba\u015fkalar\u0131n\u0131 hastal\u0131\u011f\u0131n seyri konusunda e\u011fitmek.<\/p>\n<p><strong>KURULU\u015eUNUZ HANGI HIZMETLERI SA\u011eLIYOR:<\/strong><\/p>\n<p>Facebook \u00fczerinden \u00e7evrimi\u00e7i akran destek sistemi.  Kurdu\u011fum grubun ad\u0131 \"<a href=\"https:\/\/www.facebook.com\/groups\/29111827568\/\" target=\"_blank\" rel=\"noopener noreferrer\">Ekstremite Ku\u015fa\u011f\u0131 Kas Distrofisi:  Etiketlerin ve S\u0131n\u0131rlamalar\u0131n \u00d6tesinde<\/a>\" ve \u015fu anda d\u00fcnyan\u0131n d\u00f6rt bir yan\u0131ndan 3.000'den fazla \u00fcyesi bulunmaktad\u0131r.  Grup, LGMD'nin herhangi bir t\u00fcr\u00fcne sahip olan ve hastal\u0131k s\u00fcrecinin herhangi bir a\u015famas\u0131nda bulunan herkese a\u00e7\u0131kt\u0131r.<\/p>\n<p><strong>KURULU\u015eUNUZUN EN \u00c7OK GURUR DUYDU\u011eU \u015eEY NEDIR?<\/strong><\/p>\n<p>Ara\u015ft\u0131rma i\u00e7in $50,000 katk\u0131da bulunmak.<\/p>\n<p><strong>D\u00fcnyan\u0131n KURULU\u015eUNUZ hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n<p>E\u011fer bir fark yaratmak istiyorsan\u0131z, bunu her seferinde bir ad\u0131m atarak yapabilirsiniz.<\/p>\n<p><strong>\u0130NSANLAR KURULU\u015eUNUZU DESTEKLEMEYE NASIL DAHIL OLABILIRLER?<\/strong><\/p>\n<p>Ba\u011f\u0131\u015f yap\u0131n ve\/veya LGMD Facebook grubuna kat\u0131l\u0131n.  Ba\u011f\u0131\u015f yap\u0131labilir <a href=\"http:\/\/beyondlabelslimitations.com\/donations\/\" target=\"_blank\" rel=\"noopener noreferrer\">\u00e7evrimi\u00e7i<\/a>.<\/p>\n<p><strong>KURULU\u015eUNUZLA ILETI\u015eIME GE\u00c7MENIN EN IYI YOLU NEDIR?<\/strong><\/p>\n<p>John C. Graybill II ile jcg713@aol.com adresinden e-posta yoluyla ileti\u015fime ge\u00e7in.<\/p>\n<p><strong>EKLEMEK ISTEDI\u011eINIZ BA\u015eKA BIR \u015eEY VAR MI?<\/strong><\/p>\n<p>Tedavi d\u0131\u015far\u0131da bir yerde.<\/p>\n<p>\u00a0<\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF ORGANIZATION:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0Beyond Labels &amp; Limitations\u00a0 WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2260,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,14,95],"tags":[],"class_list":["post-2259","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2a","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>ORGANIZATION: Beyond Labels &amp; 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