{"id":35777,"date":"2022-05-31T10:12:04","date_gmt":"2022-05-31T07:12:04","guid":{"rendered":"https:\/\/kutaybilen.com.tr\/?p=35777"},"modified":"2022-05-31T10:12:04","modified_gmt":"2022-05-31T07:12:04","slug":"smali-cocuklar-icin-toplumsal-medyada-kampanya-baslatildi","status":"publish","type":"post","link":"https:\/\/kutaybilen.com.tr\/?p=35777","title":{"rendered":"SMA&#8217;l\u0131 \u00c7ocuklar \u0130\u00e7in Toplumsal Medyada Kampanya Ba\u015flat\u0131ld\u0131"},"content":{"rendered":"<p>Ulusal Piyango&#8217;nun y\u0131lba\u015f\u0131 ikramiyesinde bu y\u0131l b\u00fcy\u00fck ikramiye \u201c9-8-8-4-7-5-7\u201d say\u0131lar\u0131n\u0131n bulundu\u011fu \u00e7eyrek bilete \u00e7\u0131km\u0131\u015f, fakat \u00f6b\u00fcr \u00fc\u00e7 \u00e7eyrek biletin sat\u0131lmad\u0131\u011f\u0131n\u0131 ortaya \u00e7\u0131k\u0131nca <strong>75 milyon TL&#8217;lik ikramiye<\/strong> T\u00fcrkiye Varl\u0131k Fonu&#8217;na aktar\u0131lm\u0131\u015ft\u0131.<\/p>\n<p>Bu haberin akabinde Twitter&#8217;da, Varl\u0131k Fonu&#8217;na aktar\u0131lan 75 milyon TL&#8217;nin <strong>SMA hastas\u0131 \u00e7ocuklar\u0131n tedavisinde kullan\u0131lmas\u0131<\/strong> i\u00e7in kampanya ba\u015flat\u0131ld\u0131. K\u0131sa m\u00fcddette yay\u0131lan kampanyaya pek \u00e7ok \u00fcnl\u00fc isim de kat\u0131ld\u0131. <\/p>\n<p>\n<p>\n<p><p><b>SMA hastas\u0131 \u00e7ocuklar\u0131n tek umudu Zolgensma isimli gen tedavisi:<\/b><\/p>\n<p><img decoding=\"async\" src=\"https:\/\/www.webtekno.com\/images\/editor\/default\/0002\/95\/40e53bdc8b1b22aaa54ba01a0959c8fc9c0f352f.jpeg\"\/><\/p>\n<p>SMA hastas\u0131 \u00e7ocuklar\u0131n s\u0131hhatlerine kavu\u015fmalar\u0131n\u0131n bir yolu var; Zolgensma tedavisi. Bu tedavi <strong>s\u0131rf 2 ya\u015f\u0131ndan k\u00fc\u00e7\u00fck bebeklere <\/strong>uygulanabiliyor ve hayli k\u0131ymetli bir tedavi. S\u0131rf ABD&#8217;de onaylanm\u0131\u015f olan ve uygulanan bu tedavinin fiyat\u0131 ise yakla\u015f\u0131k <strong>2,1 milyon dolar.<\/strong><\/p>\n<p>Bu y\u00fcksek fiyatl\u0131 tedavi, \u00e7ocuklar\u0131n\u0131n iyil\u015femesini ve s\u0131hhatle hayatlar\u0131na devam edebilmesini isteyen aileleri <strong>toplumsal medya \u00fczerinden \u00e7e\u015fitli yard\u0131m kampanyalar\u0131<\/strong> ile ba\u011f\u0131\u015f toplamaya y\u00f6nlendiriyor. \u015eimdiye kadar pek \u00e7ok SMA&#8217;l\u0131 \u00e7ocuk, toplumsal medya arac\u0131l\u0131\u011f\u0131yla ba\u011f\u0131\u015f maksad\u0131na ula\u015farak tedavi oldu lakin ne yaz\u0131k ki \u015fimdi gerekli ba\u011f\u0131\u015f \u00f6l\u00e7\u00fcs\u00fcn\u00fc toplayamam\u0131\u015f bebekler de var.<\/p>\n<p><b>SMA hastas\u0131 \u00e7ocuklar\u0131n ailelerinin ba\u011f\u0131\u015f toplamas\u0131 da zorla\u015ft\u0131:<\/b><\/p>\n<p><img decoding=\"async\" src=\"https:\/\/www.webtekno.com\/images\/editor\/default\/0002\/95\/effad9f878e188f56497b1338c3fccf874567045.jpeg\"\/><\/p>\n<p>T\u00fcrkiye B\u00fcy\u00fck Millet Meclisi&#8217;ne sunulan &#8220;Kitle \u0130mha Silahlar\u0131n\u0131n Yay\u0131lmas\u0131n\u0131n Finansman\u0131n\u0131n \u00d6nlenmesine Dair Kanun Teklifi&#8221; ge\u00e7ti\u011fimiz g\u00fcn yasala\u015fmas\u0131n\u0131n akabinde, SMA hastas\u0131 \u00e7ocuklar\u0131n ailelerinin <strong>yard\u0131m toplama faaliyetleri <\/strong>de zorla\u015ft\u0131.<\/p>\n<p>Bu yeni yasaya nazaran art\u0131k internet ortam\u0131nda ger\u00e7ekle\u015ftirilen her t\u00fcrl\u00fc yard\u0131m faaliyeti<strong> m\u00fcsaadeye tabi tutulacak<\/strong>. M\u00fcsaadesiz yard\u0131m toplayanlara ise para cezas\u0131 uygulanacak. Haliyle SMA hastas\u0131 \u00e7ocuklar\u0131n ailelerinin yard\u0131m kampanyalar\u0131 da gerekli m\u00fcsaadeler al\u0131nana kadar durdurulacak.<\/p>\n<div> <\/div>\n","protected":false},"excerpt":{"rendered":"<p>Ulusal Piyango&#8217;nun y\u0131lba\u015f\u0131 ikramiyesinde bu y\u0131l b\u00fcy\u00fck ikramiye \u201c9-8-8-4-7-5-7\u201d say\u0131lar\u0131n\u0131n bulundu\u011fu \u00e7eyrek bilete \u00e7\u0131km\u0131\u015f, fakat \u00f6b\u00fcr \u00fc\u00e7 \u00e7eyrek &#8230;<\/p>\n","protected":false},"author":1,"featured_media":35778,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[855],"tags":[2721],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/posts\/35777"}],"collection":[{"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=35777"}],"version-history":[{"count":1,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/posts\/35777\/revisions"}],"predecessor-version":[{"id":35779,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/posts\/35777\/revisions\/35779"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/media\/35778"}],"wp:attachment":[{"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=35777"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=35777"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=35777"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}