{"id":2414,"date":"2015-03-03T15:53:30","date_gmt":"2015-03-03T22:53:30","guid":{"rendered":"http:\/\/lw.screammedia.net\/?p=2414"},"modified":"2018-02-15T14:26:06","modified_gmt":"2018-02-15T19:26:06","slug":"tbt-a-look-back-at-our-third-annual-evening-with-emilys-entourage","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/tbt-a-look-back-at-our-third-annual-evening-with-emilys-entourage\/","title":{"rendered":"#TBT: Emily's Entourage ile \u00dc\u00e7\u00fcnc\u00fc Y\u0131ll\u0131k Ak\u015fam\u0131m\u0131za Bir Bak\u0131\u015f!"},"content":{"rendered":"<p>\u00dc\u00e7\u00fcnc\u00fc y\u0131ll\u0131k \"Emily's Entourage ile Ak\u015fam\" etkinli\u011fimiz i\u00e7in Philadelphia'n\u0131n bat\u0131 banliy\u00f6lerine gittik ve Baldwin School'da harika bir mekan bulduk. Kat\u0131l\u0131mdan kesinlikle \u00e7ok etkilendik - Entourage'\u0131n \u00fc\u00e7 y\u0131l\u0131n\u0131 kutlamam\u0131za, y\u0131ll\u0131k ba\u011f\u0131\u015f toplama kampanyam\u0131z\u0131 ba\u015flatmam\u0131za ve Emily'nin yakla\u015fan 30. do\u011fum g\u00fcn\u00fcn\u00fc kutlamam\u0131za yard\u0131mc\u0131 olmak i\u00e7in 400'den fazla ki\u015fi geldi!<\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\"aligncenter size-full wp-image-3643\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_140.jpg\" alt=\"20141213_emilys_birthday_140\" width=\"1200\" height=\"799\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_140.jpg 1200w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_140-600x400.jpg 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_140-300x200.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_140-1024x682.jpg 1024w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><br \/>\nYeni mekan\u0131m\u0131z, hafta sonu ka\u00e7amaklar\u0131, t\u00fcr\u00fcn\u00fcn tek \u00f6rne\u011fi sanat eserleri, el yap\u0131m\u0131 m\u00fccevherler ve l\u00fcks spor biletleri de dahil olmak \u00fczere y\u00fczlerce \u00fcr\u00fcn\u00fcn yer ald\u0131\u011f\u0131 geni\u015fletilmi\u015f bir sessiz m\u00fczayede i\u00e7in m\u00fckemmel bir zemin olu\u015fturdu. \u0130kram edilen yiyeceklerin yan\u0131 s\u0131ra alametifarikam\u0131z olan mini kekler, ev yap\u0131m\u0131 unlu mamuller ve lezzetli \u015fekerleme masas\u0131 da sunuldu. Tabii ki, sosyal medya arac\u0131l\u0131\u011f\u0131yla payla\u015f\u0131lmak \u00fczere, hayattan daha b\u00fcy\u00fck bir s\u0131cak hava balonu ve hepimizin sevgili Emily i\u00e7in do\u011fum g\u00fcn\u00fc dilekleri b\u0131rakt\u0131\u011f\u0131m\u0131z dev bir do\u011fum g\u00fcn\u00fc \"pastas\u0131\" da dahil olmak \u00fczere interaktif unsurlar\u0131 da dahil ettik.<\/p>\n<p><img decoding=\"async\" class=\"aligncenter size-full wp-image-3645\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_157.jpg\" alt=\"20141213_emilys_birthday_157\" width=\"1200\" height=\"799\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_157.jpg 1200w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_157-600x400.jpg 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_157-300x200.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_157-1024x682.jpg 1024w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><\/p>\n<p>Geceye damgas\u0131n\u0131 vuran konu\u015fma program\u0131m\u0131z oldu. Program, bu y\u0131l \u00fc\u00e7\u00fcnc\u00fcs\u00fc d\u00fczenlenen gecenin sunuculu\u011funu \u00fcstlenen televizyon yemek programc\u0131s\u0131 Hope Cohen ile ba\u015flad\u0131. Ard\u0131ndan Pennsylvania \u00dcniversitesi Perelman T\u0131p Fak\u00fcltesi Fizyoloji B\u00f6l\u00fcm\u00fc Ba\u015fkan\u0131 ve Emily's Entourage Bilimsel Dan\u0131\u015fma Kurulu \u00fcyesi Dr. Kevin Foskett, Emily'nin \u00f6zel genetik mutasyonunun getirdi\u011fi benzersiz zorluklar\u0131, kaydedilen bilimsel ilerlemeyi ve ara\u015ft\u0131rma i\u00e7in para toplamaya devam etmenin neden her zamankinden daha \u00f6nemli oldu\u011funu etkileyici bir \u015fekilde a\u00e7\u0131klad\u0131.<img decoding=\"async\" class=\"aligncenter size-full wp-image-3642\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_122.jpg\" alt=\"20141213_emilys_birthday_122\" width=\"1200\" height=\"799\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_122.jpg 1200w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_122-600x400.jpg 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_122-300x200.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_122-1024x682.jpg 1024w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><\/p>\n<p>Ard\u0131ndan uzun zamand\u0131r beklenen <a href=\"https:\/\/youtu.be\/YutKkKv07z0\" target=\"_blank\" rel=\"noopener\">y\u0131ll\u0131k kampanya videosu<\/a>. Video, izleyicilere kaydetti\u011fimiz \u00f6nemli ilerlemeyi, ancak hala m\u00fccadele etmemiz gereken \u00e7ok \u015fey oldu\u011funu ve durumun vahim oldu\u011funu hat\u0131rlatt\u0131. Do\u011fum g\u00fcn\u00fc k\u0131z\u0131n\u0131n kendisi de salona hitap etti ve her zaman oldu\u011fu gibi son derece dokunakl\u0131 ve etkili konu\u015fmas\u0131 salona tamamen enerji verdi. Ayr\u0131ca Emily'nin ebeveynleri ve karde\u015fleri de k\u0131zlar\u0131 ve k\u0131z karde\u015fleri i\u00e7in ki\u015fisel do\u011fum g\u00fcn\u00fc dileklerini payla\u015ft\u0131lar. Odada tek bir kuru g\u00f6z bile yoktu!<br \/>\n<iframe src=\"https:\/\/www.youtube.com\/embed\/YutKkKv07z0?rel=0&amp;showinfo=0\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<p>Gecenin en dokunakl\u0131 an\u0131 daha sonra geldi. Televizyon haber muhabiri Heather Braver'\u0131n \u00f6nc\u00fcl\u00fc\u011f\u00fcnde t\u00fcm konuklardan, \u0131\u015f\u0131klar\u0131 karart\u0131p EE'nin ada\u015f\u0131 ve s\u00fcrekli ilham kayna\u011f\u0131m\u0131z olan Emily'ye \"\u0130yi ki Do\u011fdun\" \u015fark\u0131s\u0131n\u0131 s\u00f6ylerken mor renkli parlayan \u00e7ubuk \"mumlar\" tutmalar\u0131 istendi. Emily's Entourage ve Kistik Fibrozis'in resmi rengi olan bu g\u00fc\u00e7l\u00fc mor denizi, bize Emily ve onun gibi KF ile m\u00fccadele eden herkes i\u00e7in daha nice do\u011fum g\u00fcnlerinde mumlar\u0131n yanmaya devam etmesi i\u00e7in toplulu\u011fun g\u00fcc\u00fcn\u00fc hat\u0131rlat\u0131yor. EE'nin finanse etti\u011fi \u00e7al\u0131\u015fmalar gibi ara\u015ft\u0131rmalar, \u00e7\u0131\u011f\u0131r a\u00e7an tedavileri ve bir tedaviyi ayd\u0131nlatacak olan \u015feydir - ve bu hayat kurtar\u0131c\u0131 \u00e7al\u0131\u015fmay\u0131 finanse etmek i\u00e7in paraya ihtiyac\u0131m\u0131z var.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-full wp-image-3789\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/10421166_2933667788265_886327692673524566_n.jpg\" alt=\"10421166_2933667788265_886327692673524566_n\" width=\"640\" height=\"640\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/10421166_2933667788265_886327692673524566_n.jpg 640w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/10421166_2933667788265_886327692673524566_n-300x300.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/10421166_2933667788265_886327692673524566_n-100x100.jpg 100w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/10421166_2933667788265_886327692673524566_n-600x600.jpg 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/10421166_2933667788265_886327692673524566_n-150x150.jpg 150w\" sizes=\"(max-width: 640px) 100vw, 640px\" \/><\/p>\n<p>\u0130\u015fte burada S\u0130Z, harika Entourage'\u0131m\u0131z devreye giriyor! Emily'nin KF'sini tek ba\u015f\u0131m\u0131za tedavi edemeyiz, ancak birlikte savunabilir, destekleyebilir ve nihayetinde umut ile tedavi aras\u0131ndaki bo\u015flu\u011fu doldurabiliriz. Bizi asla hayal edemeyece\u011fimiz bir ba\u015far\u0131 seviyesine ula\u015ft\u0131rd\u0131n\u0131z ve \u015fimdi me\u015faleyi ta\u015f\u0131maya devam etmek t\u00fcm Entourage'a ba\u011fl\u0131.<\/p>\n<p>Bu ak\u015fam, ne kadar yol kat etti\u011fimizi ve ayn\u0131 zamanda hep birlikte yapacak ne kadar \u00e7ok \u015feyimiz oldu\u011funu hat\u0131rlatt\u0131. <strong>Bu y\u0131k\u0131c\u0131 hastal\u0131kla ya\u015fayan herkes i\u00e7in bir tedavi bulunana kadar durmayaca\u011f\u0131z.<img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-full wp-image-3626\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_0581.jpg\" alt=\"20141213_emilys_birthday_058\" width=\"1200\" height=\"800\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_0581.jpg 1200w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_0581-600x400.jpg 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_0581-300x200.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_0581-1024x683.jpg 1024w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><\/strong><\/p>\n<p>\u0130nan\u0131lmaz Entourage'\u0131m\u0131z\u0131n bir par\u00e7as\u0131 olan herkese derin ve i\u00e7ten bir te\u015fekk\u00fcr. Sizler bizim \u00f6z\u00fcm\u00fcz ve \u0131\u015f\u0131\u011f\u0131m\u0131zs\u0131n\u0131z ve KF'li herkese umutsuzca ihtiya\u00e7 duyduklar\u0131 ve hak ettikleri derin nefesi vermeye devam eden ba\u011fl\u0131l\u0131\u011f\u0131n\u0131z i\u00e7in te\u015fekk\u00fcr ederiz. Bu amaca olan ba\u011fl\u0131l\u0131\u011f\u0131n\u0131z bizi $1 milyon toplama hedefimize ve daha da \u00f6nemlisi tedaviye b\u00fcy\u00fck bir ad\u0131m daha yakla\u015ft\u0131rd\u0131.<\/p>\n<p>Emily's Entourage ile bir Geceye kat\u0131larak destek veren ve Kistik Fibrozis ara\u015ft\u0131rmalar\u0131 i\u00e7in yakla\u015f\u0131k $1 milyon toplamam\u0131za yard\u0131mc\u0131 olan herkese TE\u015eEKK\u00dcR EDER\u0130Z.<\/p>\n<p><a href=\"https:\/\/www.facebook.com\/media\/set\/?set=a.904035772960027.1073741846.279384842091793&amp;type=1&amp;l=a94f3e9974\" target=\"_blank\" rel=\"noopener\">Etkinlikten foto\u011fraflara g\u00f6z at\u0131n<\/a><\/p>\n<p><em>Muhte\u015fem etkinlik e\u015f ba\u015fkanlar\u0131m\u0131z Lorri Bernstein ve Barbra Mellits'in yan\u0131 s\u0131ra gecenin bu kadar ba\u015far\u0131l\u0131 ge\u00e7mesine yard\u0131mc\u0131 olan t\u00fcm EE g\u00f6n\u00fcll\u00fclerimize \u00f6zel olarak te\u015fekk\u00fcr ederiz. Siz olmasayd\u0131n\u0131z bunlar\u0131n hi\u00e7biri m\u00fcmk\u00fcn olmazd\u0131!<br \/>\n<\/em><\/p>","protected":false},"excerpt":{"rendered":"<p>\u00dc\u00e7\u00fcnc\u00fc y\u0131ll\u0131k \u201cEmily's Entourage ile Ak\u015fam\u201d etkinli\u011fimiz i\u00e7in Philadelphia'n\u0131n bat\u0131 banliy\u00f6lerine gittik ve Baldwin School'da harika bir mekan bulduk. Kat\u0131l\u0131mdan kesinlikle \u00e7ok etkilendik - 400'den fazla ki\u015fi Entourage'\u0131n \u00fc\u00e7 y\u0131l\u0131n\u0131 kutlamam\u0131za, y\u0131ll\u0131k ba\u011f\u0131\u015f toplama kampanyam\u0131z\u0131 ba\u015flatmam\u0131za ve kutlamam\u0131za yard\u0131m etmek i\u00e7in geldi... <\/p>\n<div class=\"clear\"><\/div>\n<p><a href=\"https:\/\/www.emilysentourage.org\/tr\/tbt-a-look-back-at-our-third-annual-evening-with-emilys-entourage\/\" class=\"excerpt-read-more\">Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":58,"featured_media":3646,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_seopress_robots_follow":"","_seopress_robots_imageindex":"","_seopress_robots_snippet":"","_seopress_robots_primary_cat":"","_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":"","_seopress_redirections_param":"","_seopress_redirections_type":0,"_seopress_analysis_target_kw":"","_seopress_news_disabled":"","_seopress_video_disabled":"","_seopress_video":[],"_seopress_pro_schemas_manual":[],"_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":[1,6],"tags":[],"class_list":["post-2414","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","category-emilys-entourage-blog"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_161.jpg","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/2414","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=2414"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/2414\/revisions"}],"predecessor-version":[{"id":10659,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/2414\/revisions\/10659"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/3646"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=2414"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=2414"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=2414"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}