{"id":18823,"date":"2023-04-19T11:42:17","date_gmt":"2023-04-19T15:42:17","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=18823"},"modified":"2023-12-20T02:46:33","modified_gmt":"2023-12-20T07:46:33","slug":"may-is-cystic-fibrosis-awareness-month-lets-crossoutcf-for-100-of-the-cf-community","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/may-is-cystic-fibrosis-awareness-month-lets-crossoutcf-for-100-of-the-cf-community\/","title":{"rendered":"May\u0131s ay\u0131 Kistik Fibrozis Fark\u0131ndal\u0131k Ay\u0131d\u0131r: KF Toplulu\u011funun 100%'si i\u00e7in #CrossOutCF yapal\u0131m"},"content":{"rendered":"

May\u0131s ay\u0131 Emily's Entourage (EE) olarak bizim i\u00e7in y\u0131l\u0131n \u00f6nemli bir zaman\u0131d\u0131r. Kistik Fibrozis (KF) Fark\u0131ndal\u0131k Ay\u0131, 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\u0131!\u00a0\u00a0<\/span><\/p>\n

EE'nin KF Fark\u0131ndal\u0131k Ay\u0131 kampanyas\u0131n\u0131n temas\u0131 \"Cross Out CF\" olup, KF tedavilerindeki ilerlemenin geni\u015fletilmesi ve KF'li 100% ki\u015finin geride kimse kalmadan hayat kurtar\u0131c\u0131 bir tedaviye sahip olmas\u0131n\u0131 sa\u011flayarak i\u015fi bitirmeye duyulan acil ihtiyac\u0131 ifade etmektedir. Bu g\u00fc\u00e7 ve dayan\u0131\u015fmaya i\u015faret ediyor, <\/span>Ruh,<\/span> ve KF toplulu\u011funun g\u00fcc\u00fc - bireyler olarak ve \u00f6zellikle kolektif olarak bir araya geldiklerinde.\u00a0<\/span><\/p>\n

\"\"<\/p>\n

\"Cross Out CF\" kampanyas\u0131 her y\u0131l EE'deki ve KF toplulu\u011fundaki son geli\u015fmeleri yans\u0131tacak \u015fekilde evrim ge\u00e7iriyor. Bu y\u0131l kampanya yeni bir umudu yans\u0131t\u0131yor. Ge\u00e7ti\u011fimiz y\u0131l, mevcut mutasyon hedefli tedavilerden fayda g\u00f6rmeyen KF toplulu\u011funun son 10%'sinde yer alanlar i\u00e7in \u00f6nemli ila\u00e7 geli\u015ftirme ilerlemeleri g\u00f6rd\u00fck. EE'nin yarat\u0131lmas\u0131na ve ilerlemesine yard\u0131mc\u0131 oldu\u011fu bir\u00e7ok tedavi de dahil olmak \u00fczere, \u00e7ok say\u0131da tedavinin klinik deneylere do\u011fru ilerledi\u011fini g\u00f6r\u00fcyoruz.\u00a0<\/span><\/p>\n

\u015eimdiye kadar ilk kez, KF'li insanlar\u0131n 100%'sine fayda sa\u011flama potansiyeline sahip tedaviler i\u00e7in biti\u015f \u00e7izgisine do\u011fru net bir g\u00f6r\u00fc\u015f hatt\u0131m\u0131z var.<\/p><\/blockquote>\n

EE olarak tek hedefimiz budur. KF Fark\u0131ndal\u0131k Ay\u0131'n\u0131n amac\u0131 da budur - bir araya gelmek ve ilerlememizi kutlamak, <\/span>Daha fazlas\u0131 i\u00e7in acil aray\u0131\u015f\u0131m\u0131z\u0131 ikiye katlayarak, hikayelerimizi ve sesimizi y\u00fckselterek ve hayatlar\u0131m\u0131z buna ba\u011fl\u0131ym\u0131\u015f gibi ilerleyerek. \u00c7\u00fcnk\u00fc.... \u00f6yle.<\/span><\/p>\n

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

May\u0131s ay\u0131 boyunca, KF'li insanlardan aile \u00fcyelerine, ara\u015ft\u0131rmac\u0131lara ve doktorlara kadar KF perspektiflerini ve seslerini g\u00fc\u00e7lendirerek toplulu\u011fumuzdaki inan\u0131lmaz umudu, g\u00fcc\u00fc, dayan\u0131kl\u0131l\u0131\u011f\u0131 ve \u00e7e\u015fitlili\u011fi g\u00f6sterece\u011fiz.<\/span><\/p>\n

\"\"<\/p>\n

Pazartesi g\u00fcnleri, #PaintTheWorldPurple ile KF'li bir dizi harika sanat\u00e7\u0131y\u0131 ve \u00e7al\u0131\u015fmalar\u0131n\u0131 \u00f6n plana \u00e7\u0131karaca\u011f\u0131z. Sal\u0131 g\u00fcnleri, EE blogu #CFStrong serisinde KF'li bir yeti\u015fkin, KF'li bir ki\u015finin aile \u00fcyesi, bir ara\u015ft\u0131rmac\u0131 ve daha fazlas\u0131 olmak \u00fczere KF toplulu\u011fundan seslere yer verecek. \u00c7ar\u015famba g\u00fcnleri, #EEupdates arac\u0131l\u0131\u011f\u0131yla EE'de ger\u00e7ekle\u015fen \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 i\u00e7in h\u0131zl\u0131 at\u0131l\u0131mlar geli\u015ftirmek i\u00e7in yorulmadan \u00e7al\u0131\u015fan ara\u015ft\u0131rmac\u0131lar\u0131 ve doktorlar\u0131 tan\u0131tarak bilime d\u00f6nece\u011fiz. Ve haftay\u0131 sonland\u0131rmak i\u00e7in - \u00e7\u00fcnk\u00fc KF ay\u0131 \u00f6z\u00fcnde t\u00fcm d\u00fcnyay\u0131 KF ve neden HIZLI tedavilere ihtiyac\u0131m\u0131z oldu\u011fu konusunda e\u011fitmekle ilgilidir - #FactFriday, KF ve kritik tedavi ihtiyac\u0131 hakk\u0131nda daha fazla bilgi payla\u015fmaya odaklanacak.\u00a0<\/span><\/p>\n

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

T\u00fcm ay boyunca, KF toplulu\u011funun 100%'si i\u00e7in h\u0131zl\u0131 at\u0131l\u0131mlar ve bir tedavi: s\u00f6z\u00fc yaymak ve nihai hedefimize ula\u015fmak i\u00e7in \u00e7al\u0131\u015f\u0131rken \u00f6\u011frenmeye, ba\u011flant\u0131da hissetmeye ve ilham almaya haz\u0131r olun. Bu hedefe ula\u015fmak i\u00e7in, s\u00f6z\u00fc yaymak 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 ve EE'nin mesaj\u0131n\u0131 geni\u015f bir alana yaymak i\u00e7in g\u00f6nderiyi payla\u015f\u0131n!\u00a0<\/span><\/p>\n

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

Fini\u015fe do\u011fru net bir g\u00f6r\u00fc\u015f a\u00e7\u0131m\u0131z var ve oraya ula\u015fmak, hepimizin, KF toplulu\u011funun 100%'si olabilece\u011fimiz bir gelece\u011fe ula\u015fmak bizim elimizde, <\/span>Sonunda<\/span><\/i> daha rahat nefes al\u0131n - kimse geride kalmas\u0131n.<\/span><\/p>\n

100% ya da bask\u0131n. Hadi \"CF'nin \u00fcst\u00fcn\u00fc \u00e7izelim\"!<\/strong><\/p>\n

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

C\u00f6mert 2023 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>","protected":false},"excerpt":{"rendered":"

May is an important time of the year for us at Emily\u2019s Entourage (EE). It marks Cystic Fibrosis (CF) Awareness Month, a time for the community to band together to spread awareness, advocate, share personal stories, and unite behind the mission of accelerating breakthroughs and a cure for 100% of the CF community!\u00a0\u00a0 The theme… <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1361,"featured_media":18848,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"none","_seopress_titles_title":"%%sitetitle%% %%sep%% %%post_title%%","_seopress_titles_desc":"%%post_excerpt%%","_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":[],"class_list":["post-18823","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\/CROPPED-OMAGE-e1682355500690.jpg","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/18823","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\/1361"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=18823"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/18823\/revisions"}],"predecessor-version":[{"id":20913,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/18823\/revisions\/20913"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/18848"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=18823"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=18823"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=18823"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}