{"id":20893,"date":"2024-04-11T11:09:46","date_gmt":"2024-04-11T15:09:46","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=20893"},"modified":"2024-04-26T15:27:08","modified_gmt":"2024-04-26T19:27:08","slug":"may-is-cystic-fibrosis-awareness-month-lets-dare-to-dream-beyond-cf","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/may-is-cystic-fibrosis-awareness-month-lets-dare-to-dream-beyond-cf\/","title":{"rendered":"May\u0131s Kistik Fibrozis Fark\u0131ndal\u0131k Ay\u0131: KF'nin \u00d6tesini Hayal Etmeye Cesaret Edelim!"},"content":{"rendered":"

May\u0131s ay\u0131 Kistik Fibrozis (KF) Fark\u0131ndal\u0131k Ay\u0131d\u0131r ve toplumun fark\u0131ndal\u0131\u011f\u0131 yaymak, savunuculuk yapmak, ki\u015fisel hikayeleri payla\u015fmak ve KF toplulu\u011funun 100%'si i\u00e7in at\u0131l\u0131mlar\u0131 ve tedaviyi h\u0131zland\u0131rma misyonunun arkas\u0131nda birle\u015fmek i\u00e7in bir araya gelme zaman\u0131d\u0131r! EE'de y\u0131l\u0131n en sevdi\u011fimiz zamanlar\u0131ndan biri \u00e7\u00fcnk\u00fc bir par\u00e7as\u0131 olmaktan gurur duydu\u011fumuz ve sizinle payla\u015fmaktan b\u00fcy\u00fck onur duydu\u011fumuz ola\u011fan\u00fcst\u00fc KF toplulu\u011funa \u0131\u015f\u0131k tutmam\u0131za olanak tan\u0131yor.\u00a0<\/span><\/p>\n

EE'nin KF Fark\u0131ndal\u0131k Ay\u0131 temas\u0131 her y\u0131l \"Cross Out CF\" olarak belirlenmektedir. Bu tema, KF tedavilerinin geli\u015ftirilmesindeki ilerlemenin geni\u015fletilmesi ve KF'li insanlar\u0131n 100%'sinin hayat kurtar\u0131c\u0131 bir tedaviye sahip olmas\u0131n\u0131 ve geride kimsenin kalmamas\u0131n\u0131 sa\u011flamak i\u00e7in i\u015fi bitirmeye duyulan acil ihtiyac\u0131 vurgulamaktad\u0131r. \"Cross Out CF\" KF toplulu\u011funun direncini, birli\u011fini, moralini ve g\u00fcc\u00fcn\u00fc yans\u0131t\u0131yor, \u00f6zellikle de t\u00fcm topluluk i\u00e7in tedaviler geli\u015ftirme ortak hedefimiz do\u011frultusunda \u00e7al\u0131\u015fmak \u00fczere bir araya geldi\u011fimizde. 100% ya da bask\u0131n dedi\u011fimizde ciddiyiz!<\/span><\/p>\n

\"\"<\/p>\n

Bu y\u0131l, \"Cross Out CF\" kampanyam\u0131z y\u0131ll\u0131k videomuzu temel al\u0131yor ve toplumu KF'nin \u00f6tesinde bir gelecek hayal etmeye cesaret etme fikri etraf\u0131nda cesaretlendiriyor. En yeni ara\u015ft\u0131rmalar\u0131 ve ila\u00e7 geli\u015ftirmeyi ilerleterek, klinik deneylere kat\u0131l\u0131m\u0131 h\u0131zland\u0131rarak ve i\u015fbirli\u011fini geli\u015ftirmek i\u00e7in kilit payda\u015flar\u0131 bir araya getirerek bu hayale ula\u015fmak i\u00e7in \u00e7al\u0131\u015f\u0131yoruz.<\/span><\/p>\n

KF'li bireylerin duygusal ve tedavi y\u00fcklerinden kurtuldu\u011fu, seyahat, aile, kariyer geli\u015fimi, e\u011fitim ve hobilerle dolu zengin, dinamik ya\u015famlar i\u00e7in alan yaratan bir gelecek hayal ediyoruz.<\/span><\/i><\/p><\/blockquote>\n

\"Cross Out CF\" kampanyam\u0131zla, KF'li bireylerin ve \u00f6zellikle de mevcut mutasyon hedefli tedavilerden fayda g\u00f6rmeyen son 10% grubundaki bireylerin bu gelecek durumu hayal etmelerini istiyoruz<\/span> KF'nin deh\u015fetiyle k\u0131s\u0131tlanmadan daha dolu, daha zenginle\u015ftirici hayatlar ya\u015famak i\u00e7in zamana, \u00f6zg\u00fcrl\u00fc\u011fe ve g\u00fcvene sahip olduklar\u0131 bir gelecek. Bu bir gelecek <\/span>\u00f6tesinde<\/span><\/i> CF.\u00a0<\/span><\/p>\n

EE'de tek hedefimiz budur ve KF Fark\u0131ndal\u0131k Ay\u0131 da bununla ilgilidir - bir araya gelmek, temsili te\u015fvik etmek, ilerlememizi kutlamak, daha fazlas\u0131 i\u00e7in iki kat\u0131na \u00e7\u0131kmak ve hayatlar\u0131m\u0131z buna ba\u011fl\u0131ym\u0131\u015f gibi ilerlemek. \u00c7\u00fcnk\u00fc.... \u00f6yle.<\/span><\/p>\n

Haydi Sosyalle\u015felim!<\/b><\/h2>\n

May\u0131s ay\u0131 boyunca, toplumumuzdaki inan\u0131lmaz umudu, g\u00fcc\u00fc, dayan\u0131kl\u0131l\u0131\u011f\u0131 ve \u00e7e\u015fitlili\u011fi ortaya koyan KF'li ki\u015filerin, aile \u00fcyelerinin ve ara\u015ft\u0131rmac\u0131lar\u0131n KF \u00f6yk\u00fclerini ve seslerini duyuraca\u011f\u0131z.<\/span><\/p>\n

\"\"<\/p>\n

Pazartesi g\u00fcnleri, #WhereInTheWorldisEE serimizle Entourage'\u0131m\u0131z\u0131n ger\u00e7ek, k\u00fcresel eri\u015fimini g\u00f6rece\u011fiz! Sal\u0131 g\u00fcnleri, EE blogu #CFStrong serisinde CF toplulu\u011fundan seslere yer verecek. \u00c7ar\u015famba g\u00fcnleri, #EEupdates ile EE'deki \u00f6nemli \u00e7al\u0131\u015fmalar ve inan\u0131lmaz ilerlemeler hakk\u0131nda daha fazla bilgi edineceksiniz.\u00a0<\/span><\/p>\n

Ard\u0131ndan, Per\u015fembe g\u00fcnleri #SciencEE arac\u0131l\u0131\u011f\u0131yla KF tedavilerini geli\u015ftirmek i\u00e7in yorulmadan \u00e7al\u0131\u015fan ara\u015ft\u0131rmac\u0131lar\u0131 tan\u0131tarak bilime d\u00f6nece\u011fiz. Haftay\u0131 tamamlamak i\u00e7in, #FactFriday KF ve tedavilere duyulan kritik ihtiya\u00e7 hakk\u0131nda daha fazla bilgi payla\u015facak.<\/span><\/p>\n

Kat\u0131l\u0131n\u00a0<\/b><\/h2>\n

T\u00fcm ay boyunca, nihai hedefimize ula\u015fmak i\u00e7in \u00e7al\u0131\u015f\u0131rken \u00f6\u011frenmeye, ba\u011flant\u0131da hissetmeye ve ilham almaya haz\u0131r olun: h\u0131zl\u0131 at\u0131l\u0131mlar ve KF toplulu\u011funun 100%'si i\u00e7in bir tedavi. Oraya ula\u015fmak i\u00e7in yard\u0131m\u0131n\u0131za ihtiyac\u0131m\u0131z var! Bir g\u00f6nderiyi be\u011fenin, yorum yaz\u0131n veya fark\u0131ndal\u0131\u011f\u0131 art\u0131rmak i\u00e7in bir g\u00f6nderiyi payla\u015f\u0131n. Bunlar\u0131n hepsi bir araya gelir ve s\u00f6z\u00fc \u00e7ok uzaklara yaymam\u0131za yard\u0131mc\u0131 olur.<\/span><\/p>\n

Takip etti\u011finizden emin olun <\/span>Facebook<\/span><\/a>, <\/span>Instagram<\/span><\/a>, <\/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

EE olarak, her bireyin derin nefes almay\u0131 ve \u00f6zg\u00fcrce hayal kurmay\u0131 hak etti\u011fine inan\u0131yoruz.<\/em> <\/span><\/p><\/blockquote>\n

Bu gelecek, geride kalanlar i\u00e7in hayat kurtar\u0131c\u0131 tedavilerin geli\u015ftirilmesine ba\u011fl\u0131d\u0131r. Mutasyonlar\u0131n\u0131n nadirli\u011fi veya \u00f6zel durumlar\u0131 ne olursa olsun, KF'li her bir ki\u015fi i\u00e7in bu gelece\u011fi g\u00fcvence alt\u0131na almak i\u00e7in \u00e7ok \u00e7al\u0131\u015f\u0131yoruz.\u00a0<\/span><\/p>\n

\u00d6\u011frenmek, payla\u015fmak ve KF'li herkesin ger\u00e7ekten inand\u0131\u011f\u0131 bir gelece\u011fi hayal etmeye cesaret edebilece\u011fi bir d\u00fcnya yaratmaya yard\u0131mc\u0131 olmak i\u00e7in bu ay bize kat\u0131l\u0131n. <\/span><\/p>\n

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

C\u00f6mert 2024 Kistik Fibrozis Fark\u0131ndal\u0131k Ay\u0131 kampanya sponsorlar\u0131m\u0131za te\u015fekk\u00fcr etmek istiyoruz! KF'li herkesin parlak ve uzun bir gelecek hayal etmeye cesaret edebilmesi i\u00e7in \"KF'nin \u00dcst\u00fcn\u00fc \u00c7izmek\" i\u00e7in \u00e7al\u0131\u015f\u0131rken deste\u011finiz bizim i\u00e7in d\u00fcnyalara bedel.<\/span><\/p>\n

 <\/p>\n

\"\"<\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

May\u0131s ay\u0131 Kistik Fibrozis (KF) Fark\u0131ndal\u0131k Ay\u0131d\u0131r ve toplumun fark\u0131ndal\u0131\u011f\u0131 yaymak, savunuculuk yapmak, ki\u015fisel hikayeleri payla\u015fmak ve KF toplulu\u011funun 100%'si i\u00e7in at\u0131l\u0131mlar\u0131 ve tedaviyi h\u0131zland\u0131rma misyonunun arkas\u0131nda birle\u015fmek i\u00e7in bir araya gelme zaman\u0131d\u0131r! EE'de y\u0131l\u0131n en sevdi\u011fimiz zamanlar\u0131ndan biridir \u00e7\u00fcnk\u00fc bize ... <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1281,"featured_media":20895,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_titles_title":"%%sitetitle%% %%sep%% %%post_title%%","_seopress_titles_desc":"%%post_excerpt%%","_seopress_robots_index":"","_seopress_robots_follow":"","_seopress_robots_imageindex":"","_seopress_robots_snippet":"","_seopress_robots_primary_cat":"none","_seopress_robots_breadcrumbs":"","_seopress_robots_freeze_modified_date":"","_seopress_robots_custom_modified_date":"","_seopress_robots_canonical":"","_seopress_social_fb_title":"","_seopress_social_fb_desc":"","_seopress_social_fb_img":"","_seopress_social_fb_img_attachment_id":0,"_seopress_social_fb_img_width":0,"_seopress_social_fb_img_height":0,"_seopress_social_twitter_title":"","_seopress_social_twitter_desc":"","_seopress_social_twitter_img":"","_seopress_social_twitter_img_attachment_id":0,"_seopress_social_twitter_img_width":0,"_seopress_social_twitter_img_height":0,"_seopress_redirections_value":"","_seopress_redirections_enabled":"","_seopress_redirections_enabled_regex":"","_seopress_redirections_logged_status":"both","_seopress_redirections_param":"","_seopress_redirections_type":301,"_seopress_analysis_target_kw":"","_seopress_news_disabled":"","_seopress_video_disabled":"","_seopress_video":[],"_seopress_pro_schemas_manual":[{"_seopress_pro_rich_snippets_type":"none"}],"_seopress_pro_rich_snippets_disable_all":"","_seopress_pro_rich_snippets_disable":[],"_seopress_pro_schemas":[],"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[1],"tags":[],"class_list":["post-20893","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\/EE-Dare-to-Dream-Cross-Out-CF-Assets-2024_Newsletter.png","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/20893","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=20893"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/20893\/revisions"}],"predecessor-version":[{"id":20970,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/20893\/revisions\/20970"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/20895"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=20893"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=20893"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=20893"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}