{"id":12801,"date":"2019-05-01T11:33:51","date_gmt":"2019-05-01T15:33:51","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=12801"},"modified":"2023-12-20T05:17:06","modified_gmt":"2023-12-20T10:17:06","slug":"lets-get-noisy-for-cf-awareness-month","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/lets-get-noisy-for-cf-awareness-month\/","title":{"rendered":"G\u00fcr\u00fclt\u00fc Yapal\u0131m... May\u0131s KF Fark\u0131ndal\u0131k Ay\u0131!"},"content":{"rendered":"

May\u0131s ay\u0131 Kistik Fibrozis (KF) Fark\u0131ndal\u0131k Ay\u0131d\u0131r ve Emily's Entourage'da (EE) ciddiye ald\u0131\u011f\u0131m\u0131z bir ayd\u0131r. Sadece hastal\u0131k hakk\u0131nda de\u011fil, hastal\u0131\u011f\u0131n ard\u0131ndaki ola\u011fan\u00fcst\u00fc insanlar ve ilham verici hikayeler hakk\u0131nda da fark\u0131ndal\u0131k yaratman\u0131n, KF'nin sa\u00e7ma mutasyonlar\u0131 i\u00e7in h\u0131zl\u0131 at\u0131l\u0131mlar ve bir tedavi misyonumuza ula\u015fmak i\u00e7in kritik \u00f6neme sahip oldu\u011funa inan\u0131yoruz. Bizim aray\u0131\u015f\u0131m\u0131z bilimsel yay\u0131nlar veya ilerleme u\u011fruna ilerleme ile ilgili de\u011fildir. Bu, insanlarla ve KF'li insanlar\u0131n her birinin bir gelece\u011fi ve derin bir nefesi hak etti\u011fine, kimsenin geride b\u0131rak\u0131lmayaca\u011f\u0131na dair derin inanc\u0131m\u0131zla ilgilidir.<\/p>\n

\"\"<\/p>\n

 <\/p>\n

Bir s\u00fcredir EE'nin bir par\u00e7as\u0131 olanlar i\u00e7in, asla sessiz kalmad\u0131\u011f\u0131m\u0131z\u0131 biliyorsunuz, ancak bu ay ekstra g\u00fcr\u00fclt\u00fcl\u00fc oluyoruz! Ve bu sizin ilk KF Fark\u0131ndal\u0131k Ay\u0131n\u0131z olanlar i\u00e7in, harekete ho\u015f geldiniz! KF'nin sa\u00e7ma mutasyonlar\u0131 i\u00e7in h\u0131zl\u0131 at\u0131l\u0131mlar ve bir tedavi bulmak olan nihai hedefimize ula\u015fmak i\u00e7in hep birlikte \u00e7al\u0131\u015f\u0131rken \u00f6\u011frenmeye, ba\u011flant\u0131da hissetmeye ve ilham almaya haz\u0131r olun.<\/p>\n

SOSYAL MEDYAYA GENEL BAKI\u015e<\/strong><\/span><\/h3>\n

EE, gelene\u011fe sad\u0131k kalarak, May\u0131s ay\u0131 boyunca sosyal medya platformlar\u0131m\u0131zda CF ger\u00e7ekleri, ilham, hikayeler ve bilimle sanal d\u00fcnyay\u0131 doyurmak i\u00e7in s\u0131cak bir \u015fekilde gelecek Facebook<\/a>, Instagram, Twitter<\/a> ve LinkedIn<\/a>. Bizi her yerde takip etti\u011finizden emin olun!<\/p>\n

Yakla\u015fan g\u00fcnl\u00fck hashtag'lerin tad\u0131na bak\u0131n:<\/p>\n

\"\"<\/p>\n

S\u00f6z\u00fcn yay\u0131lmas\u0131na yard\u0131mc\u0131 olmak ister misiniz? Bir g\u00f6nderiyi be\u011fenin, yorum yaz\u0131n veya daha da iyisi, fark\u0131ndal\u0131\u011f\u0131 art\u0131rmak ve EE'nin mesaj\u0131n\u0131 geni\u015f bir alana yaymak i\u00e7in \u00fczerinize d\u00fc\u015feni yapmak \u00fczere g\u00f6nderiyi payla\u015f\u0131n! Tek yapman\u0131z gereken bu.<\/p>\n

FACEBOOK'UNUZU BA\u011eI\u015eLAYIN<\/strong><\/span><\/h3>\n

Facebook sayfan\u0131z t\u00fcm ay boyunca KF fark\u0131ndal\u0131\u011f\u0131n\u0131 yaymak i\u00e7in birincil gayrimenkuld\u00fcr <\/span>Uzun! Facebook'unuzu g\u00fc\u00e7l\u00fc bir reklam panosuna d\u00f6n\u00fc\u015ft\u00fcrmenin iki yolu vard\u0131r: <\/span><\/p>\n

May\u0131s ay\u0131 i\u00e7in Facebook kapak foto\u011fraf\u0131n\u0131z\u0131 de\u011fi\u015ftirin<\/strong><\/span><\/h4>\n

Kapak foto\u011fraf\u0131n\u0131z\u0131 de\u011fi\u015ftirme talimatlar\u0131:<\/p>\n

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

    \n
  1. Bu blog yaz\u0131s\u0131n\u0131n ba\u015f\u0131nda sergilenen \"Send Off CF\" kapak foto\u011fraf\u0131na gidin.\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. Film rulonuza kaydedilmi\u015f \"CF'den G\u00f6nder\" g\u00f6r\u00fcnt\u00fcs\u00fcn\u00fc se\u00e7in, s\u0131\u011fmas\u0131 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. EE Facebook sayfas\u0131ndaki \"Send Off CF\" kapak foto\u011fraf\u0131na t\u0131klay\u0131n.\u00a0<\/span><\/li>\n
    2. Resme \u00e7ift t\u0131klay\u0131n ve \"Resmi Farkl\u0131 Kaydet...\" se\u00e7ene\u011fini se\u00e7in<\/span><\/li>\n
    3. Resim bilgisayar\u0131n\u0131za kaydedildikten sonra Facebook sayfan\u0131za gidin.\u00a0<\/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 kaydetti\u011finiz \"Send Off 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<\/strong><\/span><\/h4>\n

      Profil foto\u011fraf\u0131n\u0131za ge\u00e7ici bir \u00e7er\u00e7eve ekleme talimatlar\u0131:<\/p>\n

        \n
      1. Facebook profil resminize gidin ve \"G\u00fcncelle\" kamera d\u00fc\u011fmesine t\u0131klay\u0131n veya Burada<\/a>.<\/span><\/li>\n
      2. \"\u00c7er\u00e7eve Ekle \"yi se\u00e7in.\u00a0<\/span><\/li>\n
      3. \"EE KF Fark\u0131ndal\u0131k Ay\u0131\" \u00e7er\u00e7evesini aray\u0131n ve se\u00e7in!\u00a0<\/span><\/li>\n<\/ol>\n

        CF KONUSUNDA AKILLI OLUN<\/strong><\/span><\/h3>\n

        KF Fark\u0131ndal\u0131k Ay\u0131 \u00f6z\u00fcnde e\u011fitimle ilgilidir. KF ve \u00f6zellikle sa\u00e7ma mutasyonlara sahip olanlar\u0131n heyecan verici geli\u015fmelerin gerisinde kalmas\u0131 konusunda e\u011fitimli olmak, KF toplulu\u011funun 100%'si i\u00e7in daha iyi bir gelecek yaratmak \u00fczere kitleleri bir araya getirmek i\u00e7in kritik \u00f6neme sahiptir. H\u0131zl\u0131 bir KF 101 kursu almak i\u00e7in EE Twitter hesab\u0131<\/a> g\u00fcn\u00fcn ger\u00e7e\u011fi i\u00e7in. K\u0131sa s\u00fcrede uzman olacaks\u0131n\u0131z!<\/p>\n

        HAFTALIK \u0130NSPO<\/strong><\/span><\/h3>\n

        Cuma g\u00fcn\u00fc, EE blogu #CFStrong serisinde KF'den ki\u015fisel olarak etkilenen ola\u011fan\u00fcst\u00fc insanlara \u0131\u015f\u0131k tutacak. KF'nin insanlar\u0131n ya\u015famlar\u0131 \u00fczerindeki ger\u00e7ek etkisini ve aileler ve sevdikleri \u00fczerindeki yayg\u0131n etkisini sergilemek i\u00e7in KF'li ki\u015filerden, ebeveynlerden ve ortaklardan samimi hikayeler duyacaks\u0131n\u0131z. Onlar\u0131n deneyimleriyle ba\u011flant\u0131 kurun, KF toplulu\u011funun ger\u00e7ek g\u00fcc\u00fcn\u00fc \u00f6\u011frenin ve hep birlikte KF'li herkes i\u00e7in k\u0131sa s\u00fcrede at\u0131l\u0131mlar ve bir tedavi yaratma kararl\u0131l\u0131\u011f\u0131m\u0131z\u0131 peki\u015ftirelim.<\/p>\n

        \n

        Emily's Entourage, Kistik Fibrozis, tedaviye y\u00f6nelik kazan\u0131mlar ve \u00f6zellikle de son 10% i\u00e7in hala yap\u0131lmas\u0131 gereken \u00e7al\u0131\u015fmalar konusunda fark\u0131ndal\u0131k yaratan bu \u00f6nemli harekette yer almaktan son derece gurur duymaktad\u0131r. EE, \u00e7abalar\u0131m\u0131za kat\u0131lman\u0131z i\u00e7in ilham alman\u0131z\u0131 ve bizi KF'li HERKES\u0130N daha rahat nefes alabilece\u011fi g\u00fcne yakla\u015ft\u0131rman\u0131z\u0131 umuyor.\u00a0<\/em><\/p>","protected":false},"excerpt":{"rendered":"

        May\u0131s ay\u0131 Kistik Fibrozis (KF) Fark\u0131ndal\u0131k Ay\u0131d\u0131r ve Emily's Entourage (EE) olarak ciddiye ald\u0131\u011f\u0131m\u0131z bir ayd\u0131r. Sadece hastal\u0131k hakk\u0131nda de\u011fil, ayn\u0131 zamanda hastal\u0131\u011f\u0131n ard\u0131ndaki ola\u011fan\u00fcst\u00fc insanlar ve ilham verici hikayeler hakk\u0131nda fark\u0131ndal\u0131k yaratman\u0131n, h\u0131zl\u0131 at\u0131l\u0131mlar ve KF i\u00e7in bir tedavi misyonumuza ula\u015fmak i\u00e7in kritik \u00f6neme sahip oldu\u011funa inan\u0131yoruz... <\/p>\n

        <\/div>\n

        Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1704,"featured_media":12837,"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-12801","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\/CFAwareness2019_FBCover_FINAL_R1_web.png","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/12801","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=12801"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/12801\/revisions"}],"predecessor-version":[{"id":20542,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/12801\/revisions\/20542"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/12837"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=12801"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=12801"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=12801"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}