{"id":14337,"date":"2020-05-01T06:27:35","date_gmt":"2020-05-01T10:27:35","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=14337"},"modified":"2023-12-20T02:46:32","modified_gmt":"2023-12-20T07:46:32","slug":"all-hands-on-deck-it-is-cystic-fibrosis-awareness-month","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/all-hands-on-deck-it-is-cystic-fibrosis-awareness-month\/","title":{"rendered":"Herkes elini ta\u015f\u0131n alt\u0131na koysun: Bu Ay Kistik Fibrozis Fark\u0131ndal\u0131k Ay\u0131"},"content":{"rendered":"

Son zamanlarda g\u00fcnler birbirine kar\u0131\u015fm\u0131\u015f gibi g\u00f6r\u00fcnse ve zaman bir \u015fekilde hem sonsuz derecede k\u0131sa hem de uzun gelse de, kesin olarak bildi\u011fimiz bir \u015fey var. May\u0131s ay\u0131 Kistik Fibrozis (KF) Fark\u0131ndal\u0131k Ay\u0131d\u0131r ve bu zaman\u0131n \u00e7at\u0131lardan ba\u011f\u0131rmadan ve #SendCFtoSea i\u00e7in acil aray\u0131\u015f\u0131m\u0131zda kelimeyi \u00e7ok uzaklara yaymadan ge\u00e7ip gitmesine izin vermeyece\u011fiz.<\/span><\/p>\n

\"\"<\/p>\n

Neden mi? \u00c7\u00fcnk\u00fc KF hikayesi \u00e7ok zorlay\u0131c\u0131, ilerleme \u00e7ok ak\u0131l almaz, aciliyet \u00e7ok k\u0131\u015fk\u0131rt\u0131c\u0131 ve hepsinden \u00f6nemlisi, hayatlar\u0131 dengede duran insanlar\u0131n hayatlar\u0131 \u00e7ok de\u011ferli. Daha iyisini hak ediyorlar ve hepimizin, KF toplulu\u011funun 100%'si olabilece\u011fimiz bir gelece\u011fe ula\u015fmak bizim elimizde, Sonunda<\/em> rahat nefes al\u0131n, kimse geride kalmas\u0131n.<\/p>\n

Bu ay, KF toplulu\u011funa bir \u00f6vg\u00fcd\u00fcr - ola\u011fan\u00fcst\u00fc ba\u015far\u0131lar\u0131n\u0131n, ruhlar\u0131n\u0131n ve dayan\u0131kl\u0131l\u0131klar\u0131n\u0131n bir kutlamas\u0131 ve neden (ve kimin i\u00e7in) yorulmadan \u00e7al\u0131\u015ft\u0131\u011f\u0131m\u0131za dair ay\u0131lt\u0131c\u0131 bir hat\u0131rlatma.<\/p>\n

Kemerlerinizi ba\u011flay\u0131n \u00e7\u00fcnk\u00fc bu May\u0131s ay\u0131nda \u00e7\u0131lg\u0131n bir (tekne) yolculu\u011fu bizi bekliyor. \u0130\u015fte gemiye nas\u0131l atlayabilece\u011finiz.<\/p>\n

HAYDI\u0307 SOSYALLE\u015eELI\u0307M\u00a0<\/strong><\/span><\/h2>\n

KF toplulu\u011fundan s\u00fcr\u00fckleyici ve i\u00e7ten hikayeler, g\u00fcn\u00fcn KF ger\u00e7ekleri, EE tarihinden geriye d\u00f6n\u00fck an\u0131lar, rock y\u0131ld\u0131z\u0131 KF bilim insanlar\u0131 ve ara\u015ft\u0131rmac\u0131lar\u0131na i\u00e7eriden bir bak\u0131\u015f, EE'ye yol boyunca rehberlik eden g\u00fc\u00e7l\u00fc umut \u0131\u015f\u0131klar\u0131 ve daha fazlas\u0131n\u0131 d\u00fc\u015f\u00fcn\u00fcn. \u0130\u00e7erik \u015fu sitelerde yer alacakt\u0131r Facebook<\/a>, Instagram, Twitter<\/a>, burada blogumuzda<\/a>ve LinkedIn<\/a>. Hepsi. Ay. Uzun. Takip etti\u011finizden emin olun!<\/p>\n

\"\"<\/p>\n

ZOOM ARKA PLANINIZI BA\u011eI\u015eLAYIN<\/strong><\/span><\/h2>\n

Herkesin evde kalma emri ald\u0131\u011f\u0131 \u015fu g\u00fcnlerde Zoom tam da olmas\u0131 gereken yer! Bunu KF hakk\u0131nda fark\u0131ndal\u0131k yaratmak i\u00e7in kullanmaktan daha iyi ne olabilir?<\/p>\n

T\u00fcm sanal planlar\u0131n\u0131z i\u00e7in \u00f6zel bir Yak\u0131nla\u015ft\u0131rma arka plan\u0131 ekleyin<\/strong>:<\/span><\/h3>\n
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      1. \"CF'yi Denize G\u00f6nder\" arka plan\u0131n\u0131 indirin <\/span>Burada<\/span><\/a>.\u00a0<\/span><\/li>\n
      2. Zoom'da, Video Ba\u015flat'\u0131n yan\u0131ndaki ^ i\u015faretine 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 + i\u015faretine t\u0131klay\u0131n<\/span><\/li>\n
      5. \"G\u00f6r\u00fcnt\u00fc Ekle \"ye t\u0131klay\u0131n ve ard\u0131ndan \"CF'yi Denize G\u00f6nder\" G\u00f6r\u00fcnt\u00fcs\u00fcn\u00fc 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\u0131rd\u0131\u011f\u0131n\u0131zdan emin olun.<\/span><\/li>\n<\/ol>\n<\/li>\n<\/ol>\n<\/li>\n<\/ol>\n

        FACEBOOK'UNUZU BA\u011eI\u015eLAYIN<\/strong><\/span><\/h2>\n

        Facebook sayfan\u0131z \u015fu anda en \u00f6nemli gayrimenkul. Facebook'unuzu g\u00fc\u00e7l\u00fc bir reklam panosuna d\u00f6n\u00fc\u015ft\u00fcrmenin iki yolu vard\u0131r:<\/p>\n

        May\u0131s ay\u0131 i\u00e7in Facebook kapak foto\u011fraf\u0131n\u0131z\u0131 de\u011fi\u015ftirin<\/strong><\/span><\/h3>\n

        Mobil Talimatlar<\/p>\n

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              1. Bu blog yaz\u0131s\u0131n\u0131n ba\u015f\u0131nda sergilenen \"Denize CF G\u00f6nder\" kapak foto\u011fraf\u0131na gidin.<\/li>\n
              2. \"G\u00f6r\u00fcnt\u00fcy\u00fc Kaydet\" se\u00e7ene\u011fini g\u00f6rene kadar g\u00f6r\u00fcnt\u00fcy\u00fc bas\u0131l\u0131 tutun.<\/li>\n
              3. G\u00f6r\u00fcnt\u00fc film rulonuza kaydedildikten sonra Facebook Sayfan\u0131za gidin.<\/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.<\/li>\n
              5. Film rulonuza kaydedilmi\u015f \"CF'yi Denize G\u00f6nder\" g\u00f6r\u00fcnt\u00fcs\u00fcn\u00fc se\u00e7in, s\u0131\u011fmas\u0131 i\u00e7in s\u00fcr\u00fckleyin ve \"Kaydet \"e bas\u0131n.<\/li>\n<\/ol>\n<\/li>\n<\/ol>\n<\/li>\n<\/ol>\n<\/li>\n<\/ol>\n

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

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                      1. EE Facebook sayfas\u0131ndaki \"Denize CF G\u00f6nder\" kapak foto\u011fraf\u0131na t\u0131klay\u0131n.<\/li>\n
                      2. Resme \u00e7ift t\u0131klay\u0131n ve \"Resmi Farkl\u0131 Kaydet...\" se\u00e7ene\u011fini se\u00e7in<\/li>\n
                      3. Resim bilgisayar\u0131n\u0131za kaydedildikten sonra Facebook sayfan\u0131za gidin.<\/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.<\/li>\n
                      5. Bilgisayar\u0131n\u0131za kaydedilmi\u015f \"Denize CF G\u00f6nder\" kapak foto\u011fraf\u0131n\u0131 se\u00e7in, s\u0131\u011fmas\u0131 i\u00e7in s\u00fcr\u00fckleyin ve \"De\u011fi\u015fiklikleri Kaydet \"e bas\u0131n.<\/li>\n<\/ol>\n<\/li>\n<\/ol>\n<\/li>\n<\/ol>\n<\/li>\n<\/ol>\n

                        Facebook profil foto\u011fraf\u0131n\u0131za ge\u00e7ici bir EE \u00e7er\u00e7evesi ekleyin<\/strong><\/span><\/h3>\n

                        Talimatlar<\/p>\n

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                              1. Facebook profil resminize gidin ve \"G\u00fcncelle\" kamera d\u00fc\u011fmesine t\u0131klay\u0131n.<\/li>\n
                              2. \"\u00c7er\u00e7eve Ekle \"yi se\u00e7in.<\/li>\n
                              3. \"2020 EE KF Fark\u0131ndal\u0131k Ay\u0131\" \u00e7er\u00e7evesini (deniz feneriyle birlikte!) aray\u0131n ve se\u00e7in.<\/li>\n<\/ol>\n<\/li>\n<\/ol>\n<\/li>\n<\/ol>\n<\/li>\n<\/ol>\n

                                YO\u011eUN SOSYAL TAKVI\u0307MLERI\u0307NI\u0307ZI\u0307 I\u0307\u015eARETLEYI\u0307N<\/strong><\/span><\/h2>\n

                                KF Fark\u0131ndal\u0131k Ay\u0131, t\u00fcr\u00fcn\u00fcn ilk \u00f6rne\u011fi olan ve EE'nin canl\u0131, sanal ve k\u00fcresel bir etkinlikle CANLI!<\/strong>, k\u00fcresel bir Entourage i\u00e7in yeniden tasarlanm\u0131\u015f bir sanal deneyim<\/em>, \u00fczerinde 27 May\u0131s 2020 \u00c7ar\u015famba g\u00fcn\u00fc saat 20:00 ET\/7:00 CT\/5:00 PT.<\/strong> COVID-19 \u0131\u015f\u0131\u011f\u0131nda y\u0131ll\u0131k EENY etkinli\u011fimizden d\u00f6n\u00fc\u015ft\u00fcr\u00fclm\u00fc\u015ft\u00fcr, CANLI!<\/strong> d\u00fcnyan\u0131n en \u00e7ok ihtiya\u00e7 duydu\u011fu bir zamanda topluluk, ba\u011flant\u0131 ve umudu te\u015fvik edecektir.<\/p>\n

                                \"\"<\/p>\n

                                En iyi k\u0131sm\u0131 m\u0131? Asl\u0131nda iki tane var. Birincisi, kay\u0131t \u00fccretsizdir. \u0130kincisi, bu sanal format, KF'li ki\u015filerin \u00e7apraz enfeksiyon endi\u015fesi olmadan ilk kez bir EE etkinli\u011fine kat\u0131lmalar\u0131na olanak tan\u0131yor! Davetli posta listesine kat\u0131ld\u0131\u011f\u0131n\u0131zdan emin olun Burada<\/a>!<\/p>\n

                                Yelkenleri a\u00e7arken, \u0131\u015f\u0131k fenerlerini takip ederken ve CF'yi sonsuza dek denize g\u00f6nderirken bize kat\u0131l\u0131n.<\/p>\n

                                CF FARKINDALIK AYI SPONSORLARIMIZA TE\u015eEKK\u00dcR EDERI\u0307Z<\/strong><\/span><\/h2>\n

                                \"\"<\/p>\n

                                \n

                                Emily's Entourage, Kistik Fibrozis, bug\u00fcne kadar elde edilen nefes kesici ba\u015far\u0131lar ve son 10% i\u00e7in hala acilen yap\u0131lmas\u0131 gereken \u00e7al\u0131\u015fmalar konusunda fark\u0131ndal\u0131k yaratan bu \u00f6nemli kampanyaya kat\u0131lan t\u00fcm kurumsal sponsorlara minnettard\u0131r. EE, \u00e7abalar\u0131m\u0131za kat\u0131larak KF n\u00fcfusunun 100%'sinin daha rahat nefes alabilece\u011fi g\u00fcne bizi yakla\u015ft\u0131rman\u0131z i\u00e7in ilham alman\u0131z\u0131 umuyor. <\/em><\/p>","protected":false},"excerpt":{"rendered":"

                                While days seem to blend together lately and time somehow feels both infinitely short and long, there is one thing we know for sure. May is Cystic Fibrosis (CF) Awareness Month, and we will not let this time pass us by without shouting from the rooftops and spreading the word far and wide in our… <\/p>\n

                                <\/div>\n

                                Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1704,"featured_media":14360,"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":"","_seopress_analysis_target_kw":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1],"tags":[52,126,127,7,137,12,139,130,131,138],"class_list":["post-14337","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-cf-awareness","tag-coronavirus","tag-covid-19","tag-cystic-fibrosis","tag-cystic-fibrosis-awareness-month","tag-emilys-entourage","tag-facebook","tag-virtual","tag-work-from-home","tag-zoom"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/2020_CFAwarenessMonth_Graphic_InstaFeed.png","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/14337","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\/1704"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=14337"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/14337\/revisions"}],"predecessor-version":[{"id":20338,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/14337\/revisions\/20338"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/14360"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=14337"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=14337"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=14337"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}