{"id":1386,"date":"2013-06-10T15:57:03","date_gmt":"2013-06-10T22:57:03","guid":{"rendered":"http:\/\/lw.screammedia.net\/?p=1386"},"modified":"2023-12-20T03:24:37","modified_gmt":"2023-12-20T08:24:37","slug":"recapping-our-incredible-cf-warriors-from-cf-awareness-month","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/recapping-our-incredible-cf-warriors-from-cf-awareness-month\/","title":{"rendered":"EE, KF Fark\u0131ndal\u0131k Ay\u0131 i\u00e7in KF Sava\u015f\u00e7\u0131lar\u0131n\u0131 Sergiliyor"},"content":{"rendered":"

KF Fark\u0131ndal\u0131k Ay\u0131 \u015ferefine Emily's Entourage'da bir KF Sava\u015f\u00e7\u0131s\u0131 yer ald\u0131 Facebook sayfas\u0131<\/a> May\u0131s ay\u0131nda her \u00c7ar\u015famba. Serinin amac\u0131, bu hastal\u0131\u011fa bir y\u00fcz kazand\u0131rmak ve Kistik Fibrozis hastas\u0131 olmalar\u0131na ra\u011fmen \u00fcretken, tatmin edici ve ilham verici hayatlar ya\u015fayan harika insanlar\u0131 sergilemekti.<\/p>\n

KF toplulu\u011funun b\u00f6ylesine ola\u011fan\u00fcst\u00fc \u00fcyelerini \u00f6ne \u00e7\u0131karmak b\u00fcy\u00fck bir ayr\u0131cal\u0131kt\u0131. Umuyoruz ki Facebook takip\u00e7ilerimiz KF tedavisine y\u00f6nelik umutsuz aray\u0131\u015f\u0131m\u0131zda K\u0130MLER i\u00e7in m\u00fccadele etti\u011fimizi g\u00f6rebilmi\u015flerdir. Hepsinden \u00f6nemlisi, \u00f6ne \u00e7\u0131kard\u0131\u011f\u0131m\u0131z t\u00fcm inan\u0131lmaz KF Sava\u015f\u00e7\u0131lar\u0131na ve hayatlar\u0131n\u0131n her g\u00fcn\u00fc, her nefeste bu hastal\u0131kla m\u00fccadele eden di\u011fer binlerce KF sava\u015f\u00e7\u0131s\u0131na en i\u00e7ten \u015f\u00fckranlar\u0131m\u0131z\u0131 ve hayranl\u0131\u011f\u0131m\u0131z\u0131 ifade etmek istiyoruz.<\/p>\n

\u0130\u015fte CF Warrior kampanyam\u0131z\u0131n bir \u00f6zeti:<\/p>\n

Sava\u015f\u00e7\u0131 #1<\/strong> tan\u0131t\u0131ma ihtiyac\u0131 olmayan bir adamd\u0131 - biricik Josh Mogren. Josh hakk\u0131nda daha fazla bilgi i\u00e7in\u00a0Joshland'e Ho\u015f Geldiniz: Blog ve YouTube Kanal\u0131<\/a>'da \u00e7ocuklara \u00f6z bak\u0131m\u0131n \u00f6nemini \u00f6\u011freten muhte\u015fem \u00e7al\u0131\u015fmas\u0131n\u0131 izleyin.\u00a0Kistik Fibrozis Fark\u0131ndal\u0131\u011f\u0131 \u0130\u00e7in Moganko<\/a>adresinden ula\u015fabilir ve \u00e7e\u015fitli konulardaki orijinal podcast'lerini dinleyebilirsiniz.\u00a0Joshland Filtresiz Podcast<\/a>.<\/p>\n

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Sava\u015f\u00e7\u0131 #2<\/strong> k\u0131v\u0131rc\u0131k sa\u00e7lar\u0131, g\u00fczel mavi g\u00f6zleri ve kalbinizi eritecek g\u00fcl\u00fcmsemesiyle sadece 3 ya\u015f\u0131nda olan sevimli Drew'du. Drew ve s\u00fcper annesi Erin'in KF yolculu\u011fu hakk\u0131nda daha fazla bilgiyi \u015fu adresten okuyabilirsiniz Doin' It For Drew<\/a>!<\/p>\n

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\u2018<\/strong><\/p>\n

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Sava\u015f\u00e7\u0131 #3<\/strong> bizim kendi Emily'mizdi. Emily'nin \u00c7evresi<\/a>. T\u00fcm bu heyecan i\u00e7inde, EE'nin arkas\u0131ndaki motivasyonu g\u00f6zden ka\u00e7\u0131rmak kolayd\u0131r. Bu ger\u00e7ekler, Emily'nin ve KF'li herkesin m\u00fcmk\u00fcn oldu\u011funca normal ve \u00fcretken bir hayat ya\u015famak i\u00e7in her g\u00fcn ne kadar \u00e7ok \u00e7al\u0131\u015ft\u0131\u011f\u0131n\u0131 hat\u0131rlat\u0131yor. Yine de y\u00fcksek lisans dereceleri al\u0131yorlar, kariyer basamaklar\u0131n\u0131 t\u0131rman\u0131yorlar, ailelerini b\u00fcy\u00fct\u00fcyorlar ve tutkular\u0131n\u0131n pe\u015finden gidiyorlar - KF'nin onlar\u0131 hayallerine ula\u015fmaktan al\u0131koymas\u0131na izin vermiyorlar!<\/p>\n

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Sava\u015f\u00e7\u0131 #4<\/strong> Christy Hubbard Hamilton'd\u0131. G\u00fczelli\u011finin sizi aldatmas\u0131na izin vermeyin. Bu s\u00fcper kad\u0131n KF Sava\u015f\u00e7\u0131s\u0131'n\u0131 yepyeni bir seviyeye ta\u015f\u0131yor! Kendisi ya\u015fayan bir akci\u011fer VE b\u00f6brek nakli al\u0131c\u0131s\u0131, yani her ikisi de canl\u0131 organ ba\u011f\u0131\u015f\u00e7\u0131lar\u0131ndan geldi. Bunun da \u00f6tesinde, sevgi dolu bir anne, e\u015f ve KF toplulu\u011funda s\u00fcrekli umut ve destek kayna\u011f\u0131. Tamamen \u015fa\u015f\u0131rt\u0131c\u0131, de\u011fil mi?! KF ve organ nakli ile ilgili yolculu\u011funu \u015fu adresteki blogundan okuyabilirsiniz http:\/\/colormehealthy.blogspot.com\/<\/a> adresinden Akci\u011fer Nakli Vakf\u0131 hakk\u0131nda bilgi edinebilirsiniz. http:\/\/lungtransplantfoundation.org<\/a>.<\/p>\n

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Son olarak, ama kesinlikle en az de\u011fil, Sava\u015f\u00e7\u0131 #5<\/strong> Emily Schaller'd\u0131. Emily her \u015fekilde y\u00fcksek sesle ya\u015f\u0131yor. O bir rock y\u0131ld\u0131z\u0131 - hay\u0131r, ama cidden, o bir grupta davulcu ve harika Rock CF Vakf\u0131<\/a>. Orijinal KF akci\u011ferleriyle bir maraton ko\u015fucusu. Ve son olarak, Emily hayat de\u011fi\u015ftiren yeni ila\u00e7 Kalydeco'dan yararlanan 4%'lik \u015fansl\u0131 KF'li insanlardan biri olmas\u0131na ra\u011fmen, deneyimini KF toplulu\u011fu i\u00e7in savunuculuk yapmaya ve ba\u011f\u0131\u015f toplamaya devam etmek i\u00e7in kullan\u0131yor. Bundan daha asil bir \u015fey d\u00fc\u015f\u00fcnemiyoruz!<\/p>\n

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T\u00fcm CF sava\u015f\u00e7\u0131lar\u0131m\u0131za muazzam bir TE\u015eEKK\u00dcR!!! Burada, EE'de yapt\u0131\u011f\u0131m\u0131z her \u015feyin arkas\u0131ndaki motive edici g\u00fc\u00e7 ger\u00e7ekten sizlersiniz.<\/p>","protected":false},"excerpt":{"rendered":"

Emily's Entourage, KF Fark\u0131ndal\u0131k Ay\u0131 \u015ferefine May\u0131s ay\u0131nda her \u00c7ar\u015famba Facebook sayfam\u0131zda bir KF Sava\u015f\u00e7\u0131s\u0131na yer verdi. Dizinin amac\u0131, bu hastal\u0131\u011fa bir y\u00fcz kazand\u0131rmak ve Kistik Fibrozis hastas\u0131 olmalar\u0131na ra\u011fmen \u00fcretken, tatmin edici ve ilham verici hayatlar ya\u015fayan muhte\u015fem insanlar\u0131 sergilemekti. Bu b\u00fcy\u00fck bir ayr\u0131cal\u0131kt\u0131... <\/p>\n

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Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":58,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"","_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":[1,6],"tags":[],"class_list":["post-1386","post","type-post","status-publish","format-standard","hentry","category-uncategorized","category-emilys-entourage-blog"],"acf":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/1386","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\/58"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=1386"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/1386\/revisions"}],"predecessor-version":[{"id":20382,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/1386\/revisions\/20382"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=1386"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=1386"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=1386"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}