{"id":16884,"date":"2022-05-01T11:00:23","date_gmt":"2022-05-01T15:00:23","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=16884"},"modified":"2023-12-20T02:46:33","modified_gmt":"2023-12-20T07:46:33","slug":"cf-awareness-month-putting-an-end-to-cf-once-and-for-all","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/cf-awareness-month-putting-an-end-to-cf-once-and-for-all\/","title":{"rendered":"KF Fark\u0131ndal\u0131k Ay\u0131: KF'ye Bir Kez ve Herkes \u0130\u00e7in Son Vermek"},"content":{"rendered":"

May\u0131s ay\u0131 Kistik Fibrozis (KF) Fark\u0131ndal\u0131k Ay\u0131d\u0131r ve t\u00fcm KF toplulu\u011funun savunuculuk yapmak, fark\u0131ndal\u0131\u011f\u0131 yaymak, ki\u015fisel hikayeleri payla\u015fmak ve KF'li t\u00fcm insanlar i\u00e7in at\u0131l\u0131mlar\u0131 ve tedaviyi h\u0131zland\u0131rma misyonunun arkas\u0131nda birle\u015fmek i\u00e7in bir araya geldi\u011fi bir zamand\u0131r. Ge\u00e7en y\u0131l, toplumdan bizimle birlikte \"KF'nin \u00fcst\u00fcn\u00fc \u00e7izmelerini\" istedik. Bu, KF'ye bir kez ve herkes i\u00e7in bir son vermek i\u00e7in bir g\u00fc\u00e7 ve inan\u00e7 g\u00f6sterisinde bir araya gelmek i\u00e7in toplanma \u00e7\u0131\u011fl\u0131\u011f\u0131m\u0131z olarak hizmet etmeye devam ediyor.\u00a0<\/span><\/p>\n

\"\"<\/p>\n

\"Cross Out CF\", kistik fibrozisin t\u00fcm ac\u0131mas\u0131z ger\u00e7eklerine \"art\u0131k yok\" demekle ilgilidir. Saatlerce s\u00fcren t\u0131bbi tedavilerin \u00fczerini \u00e7izin. \u00d6ks\u00fcr\u00fc\u011f\u00fcn \u00fcst\u00fcn\u00fc \u00e7izin. Hastaneye yat\u0131\u015flar\u0131n \u00fczerini \u00e7izin. Korkunun \u00fczerini \u00e7izin. \u0130zolasyonun \u00fcst\u00fcn\u00fc \u00e7izin. Ac\u0131n\u0131n \u00fcst\u00fcn\u00fc \u00e7izin. Sevdi\u011fimiz insanlar i\u00e7in bir y\u00fck gibi hissetmekten vazge\u00e7in. \u00d6nemli \u015feyleri ka\u00e7\u0131rman\u0131n \u00fczerini \u00e7izin.\u00a0<\/span><\/p>\n

Bunun yerine, CF'nin bizden ald\u0131\u011f\u0131 her \u015feyi en \u00e7ok \u00f6nemsedi\u011fimiz \u015feylerle de\u011fi\u015ftirelim. Umut. Topluluk dayan\u0131\u015fmas\u0131. Daha fazla ara\u015ft\u0131rma. \u0130novasyon. Ve KF toplulu\u011funun 100%'si i\u00e7in h\u0131zl\u0131 at\u0131l\u0131mlar, kimse geride kalmas\u0131n.\u00a0<\/span><\/p>\n

KF toplulu\u011funun her k\u00f6\u015fesinden KF'nin arkada\u015flar, aileler ve \u00f6zellikle de bu hastal\u0131kla her g\u00fcn ya\u015fayan insanlar \u00fczerindeki etkisini ifade eden hikayeler duyduk ve bunlar\u0131 sizlerle payla\u015faca\u011f\u0131z. KF'li \u00fcniversite \u00f6\u011frencisi, normal bir hayat i\u00e7in \u00e7aresiz. O\u011flunun ihtiyac\u0131 olan ve hak etti\u011fi bak\u0131m\u0131 almas\u0131n\u0131 isteyen bir ebeveyn. KF'nin \u00e7ok sevdi\u011fi birine zarar vermesine sadece seyirci kalabilen bir k\u0131z karde\u015f.\u00a0<\/span><\/p>\n

Art\u0131k yeter. Cesur ve h\u0131zl\u0131 bir \u015fekilde harekete ge\u00e7me zaman\u0131 geldi ve bu hepimize ba\u011fl\u0131.<\/span><\/p>\n

Bizimle Sosyalle\u015fin!<\/b><\/h2>\n

May\u0131s ay\u0131 boyunca, KF'li ki\u015filerin ve ailelerinin ilk elden deneyimlerini payla\u015fmak ve sizi h\u0131zl\u0131 at\u0131l\u0131mlar ve bir tedavi geli\u015ftirmek i\u00e7in yorulmadan \u00e7al\u0131\u015fan adanm\u0131\u015f bilim insanlar\u0131yla tan\u0131\u015ft\u0131rmak da dahil olmak \u00fczere, KF toplulu\u011funun d\u00f6rt bir yan\u0131ndan gelen sesleri y\u00fckseltece\u011fiz.\u00a0<\/span><\/p>\n

Ayr\u0131ca g\u00fcnl\u00fck KF ger\u00e7ekleri, ilham verici foto\u011fraflar, videolar ve al\u0131nt\u0131lar yay\u0131nlayaca\u011f\u0131z ve elbette EE'nin KF ara\u015ft\u0131rmalar\u0131n\u0131 h\u0131zland\u0131rmak i\u00e7in yapt\u0131\u011f\u0131 t\u00fcm muazzam \u00e7al\u0131\u015fmalardan sizi haberdar etmeye devam edece\u011fiz. Bizi takip etti\u011finizden emin olun <\/span>Facebook<\/span><\/a>, <\/span>Instagram<\/span>, <\/span>Twitter<\/span><\/a>, <\/span>LinkedIn<\/span><\/a>ve bizim <\/span>blog<\/span><\/a> - ve e\u011fer hen\u00fcz yapmad\u0131ysan\u0131z, l\u00fctfen <\/span>e-b\u00fcltenimize abone olun<\/span><\/a>. #CrossOutCF hashtag'ini kullanarak sohbete kat\u0131labilirsiniz!<\/span><\/p>\n

\"\"<\/p>\n

Zoom Arkada\u015flar\u0131n\u0131za S\u00f6yleyin<\/b><\/h2>\n

D\u00fcnya uzun bir iki y\u0131l\u0131n ard\u0131ndan yeniden a\u00e7\u0131lmaya ba\u015flasa bile, Zoom toplant\u0131lar\u0131 burada kalmaya devam edecek. Neden de\u011ferli Zoom arka plan gayrimenkul\u00fcn\u00fcz\u00fc KF toplulu\u011funu desteklemek i\u00e7in kullanmayas\u0131n\u0131z? T\u00fcm ay boyunca fark\u0131ndal\u0131\u011f\u0131 art\u0131rmaya yard\u0131mc\u0131 olmak i\u00e7in aramalar\u0131n\u0131za resmi #CrossOutCF Zoom arka plan\u0131n\u0131 ekleyin.<\/span><\/p>\n

\"\"<\/p>\n

Yakla\u015fan t\u00fcm sanal toplant\u0131lar\u0131n\u0131z i\u00e7in \u00f6zel bir Zoom arka plan\u0131 ekleyin:<\/b><\/p>\n

    \n
  1. Yukar\u0131daki \"Cross Out CF\" arka plan\u0131n\u0131 resme sa\u011f t\u0131klay\u0131p bilgisayar\u0131n\u0131za kaydederek indirin<\/span><\/li>\n
  2. Zoom'da oturum a\u00e7m\u0131\u015fken, Video Ba\u015flat'\u0131n yan\u0131ndaki oka (^) t\u0131klay\u0131n<\/span><\/li>\n
  3. \"Sanal Arka Plan Se\u00e7 \"e t\u0131klay\u0131n<\/span><\/li>\n
  4. Yeni bir arka plan resmi eklemek i\u00e7in art\u0131 i\u015faretine (+) t\u0131klay\u0131n<\/span><\/li>\n
  5. \"Resim Ekle \"ye t\u0131klay\u0131n ve ard\u0131ndan bilgisayar\u0131n\u0131zdan \"Cross Out CF\" resmini se\u00e7in<\/span><\/li>\n
  6. G\u00f6r\u00fcnt\u00fcn\u00fcn geriye do\u011fru olmad\u0131\u011f\u0131ndan emin olmak i\u00e7in \"videomu yans\u0131t\" se\u00e7ene\u011finin i\u015faretini kald\u0131r\u0131n<\/span><\/li>\n<\/ol>\n

    Facebook Arkada\u015flar\u0131n\u0131za S\u00f6yleyin\u00a0<\/b><\/h2>\n

    Facebook kapak foto\u011fraf\u0131n\u0131z\u0131 de\u011fi\u015ftirerek veya profil foto\u011fraf\u0131n\u0131za ge\u00e7ici bir \u00e7er\u00e7eve ekleyerek (ya da her ikisini birden) Facebook sayfan\u0131z\u0131 KF Fark\u0131ndal\u0131k Ay\u0131n\u0131 destekleyen g\u00fc\u00e7l\u00fc bir dijital reklam panosuna d\u00f6n\u00fc\u015ft\u00fcr\u00fcn!<\/span><\/p>\n

    \"\"<\/p>\n

    May\u0131s ay\u0131 i\u00e7in Facebook kapak foto\u011fraf\u0131n\u0131z\u0131 de\u011fi\u015ftirin:<\/b><\/p>\n

    Mobil Talimatlar<\/span><\/p>\n

      \n
    1. \u015euraya git <\/span>\"CF'nin \u00dczerini \u00c7izin\" <\/span>\u00a0yukar\u0131daki kapak foto\u011fraf\u0131\u00a0<\/span><\/li>\n
    2. \"G\u00f6r\u00fcnt\u00fcy\u00fc Kaydet\" se\u00e7ene\u011fini g\u00f6rene kadar g\u00f6r\u00fcnt\u00fcy\u00fc bas\u0131l\u0131 tutun\u00a0<\/span><\/li>\n
    3. G\u00f6r\u00fcnt\u00fc film rulonuza kaydedildikten sonra Facebook sayfan\u0131za gidin<\/span><\/li>\n
    4. Mevcut kapak foto\u011fraf\u0131n\u0131zdaki \"D\u00fczenle\" d\u00fc\u011fmesine t\u0131klay\u0131n, ard\u0131ndan \"Foto\u011fraf Y\u00fckle \"yi se\u00e7in\u00a0<\/span><\/li>\n
    5. Se\u00e7in <\/span>\"CF'nin \u00dczerini \u00c7izin\"<\/span> film rulonuza kaydedilen g\u00f6r\u00fcnt\u00fcy\u00fc s\u0131\u011fd\u0131rmak i\u00e7in s\u00fcr\u00fckleyin ve \"Kaydet \"e bas\u0131n\u00a0<\/span><\/li>\n<\/ol>\n

      Masa\u00fcst\u00fc Talimatlar\u0131<\/span><\/p>\n

        \n
      1. Yukar\u0131daki \"Cross Out CF\" kapak foto\u011fraf\u0131na veya EE Facebook sayfas\u0131na t\u0131klay\u0131n\u00a0<\/span><\/li>\n
      2. Resme sa\u011f t\u0131klay\u0131n ve \"Resmi Farkl\u0131 Kaydet \"i se\u00e7in<\/span><\/li>\n
      3. G\u00f6r\u00fcnt\u00fc bilgisayar\u0131n\u0131za kaydedildikten sonra Facebook sayfan\u0131za gidin<\/span><\/li>\n
      4. Sol \u00fcst k\u00f6\u015fedeki \"Kapak Foto\u011fraf\u0131n\u0131 G\u00fcncelle \"ye t\u0131klay\u0131n, ard\u0131ndan \"Foto\u011fraf Y\u00fckle \"yi se\u00e7in<\/span><\/li>\n
      5. Bilgisayar\u0131n\u0131za kaydedilen \"Cross Out CF\" kapak foto\u011fraf\u0131n\u0131 se\u00e7in, s\u0131\u011fmas\u0131 i\u00e7in s\u00fcr\u00fckleyin ve \"De\u011fi\u015fiklikleri Kaydet \"e bas\u0131n\u00a0<\/span><\/li>\n<\/ol>\n

        Facebook profil foto\u011fraf\u0131n\u0131za ge\u00e7ici bir EE \u00e7er\u00e7evesi ekleyin\u00a0<\/b><\/p>\n

        Twibbon sayfam\u0131z\u0131 ziyaret edin<\/a> 'a t\u0131klay\u0131n ve Cross Out CF \u00e7er\u00e7evesini profil foto\u011fraf\u0131n\u0131za eklemek i\u00e7in talimatlar\u0131 izleyin.<\/p>\n

        KF Fark\u0131ndal\u0131k Ay\u0131 Sponsorlar\u0131m\u0131za Te\u015fekk\u00fcr Ederiz<\/b><\/h2>\n

        C\u00f6mert 2022 Kistik Fibrozis Fark\u0131ndal\u0131k Ay\u0131 kampanya sponsorlar\u0131m\u0131za te\u015fekk\u00fcr etmek istiyoruz! KF toplumunun 100%'si i\u00e7in KF'nin \u00fcst\u00fcn\u00fc \u00e7izme \u00e7abalar\u0131m\u0131z ancak \u00f6zverili kurumsal sponsorlar\u0131m\u0131z\u0131n deste\u011fi sayesinde m\u00fcmk\u00fcn olmaktad\u0131r.<\/span><\/p>\n

        \"\"<\/p>\n

        \"\"<\/p>\n

        Arcturus Therapeutics - <\/strong>Chiesi - <\/strong>Parmak Boyas\u0131 - <\/strong>Ionis<\/strong><\/h3>\n

        Folia Sa\u011fl\u0131k - Horizon<\/strong><\/h4>","protected":false},"excerpt":{"rendered":"

        May is Cystic Fibrosis (CF) Awareness Month, a time for the entire CF community to come together to advocate, spread awareness, share personal stories, and unite behind the mission of accelerating breakthroughs and a cure for all people with CF. Last year, we asked the community to \u201cCross Out CF\u201d with us. This continues to… <\/p>\n

        <\/div>\n

        Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1281,"featured_media":16893,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"none","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-16884","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/CFA-Kickoff-Post-Featured.png","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/16884","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/users\/1281"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=16884"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/16884\/revisions"}],"predecessor-version":[{"id":20340,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/16884\/revisions\/20340"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/16893"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=16884"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=16884"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=16884"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}