{"id":18073,"date":"2023-01-23T13:53:34","date_gmt":"2023-01-23T18:53:34","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=18073"},"modified":"2023-11-13T17:13:51","modified_gmt":"2023-11-13T22:13:51","slug":"emilys-entourage-ee-hosted-5th-annual-cocktail-reception-at-nacfc-2022","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/emilys-entourage-ee-hosted-5th-annual-cocktail-reception-at-nacfc-2022\/","title":{"rendered":"Emily's Entourage (EE) NACFC 2022'de 5. Y\u0131ll\u0131k Kokteyl Resepsiyonuna Ev Sahipli\u011fi Yapt\u0131"},"content":{"rendered":"<h3 style=\"text-align: justify;\"><strong><i>2019'dan bu yana ilk kez y\u00fcz y\u00fcze d\u00fczenlenen ve yaln\u0131zca davetlilerin kat\u0131ld\u0131\u011f\u0131 resepsiyon, EE'nin bug\u00fcne kadarki ba\u015far\u0131lar\u0131n\u0131 kutlamak, se\u00e7kin bilim toplulu\u011funu tan\u0131mak ve onurland\u0131rmak ve EE'nin misyonu \u00fczerine d\u00fc\u015f\u00fcnmek i\u00e7in kistik fibrozis (KF) toplulu\u011fu \u00fcyelerini bir araya getirdi<\/i><\/strong><\/h3>\n<p style=\"text-align: justify;\"><span style=\"font-weight: 400;\">Emily's Entourage (EE), 4 Kas\u0131m 2022 tarihinde Kuzey Amerika Kistik Fibrozis Konferans\u0131'nda (NACFC) 5. Y\u0131ll\u0131k, sadece davetlilere a\u00e7\u0131k kokteyline ev sahipli\u011fi yapt\u0131. <\/span><span style=\"font-weight: 400;\">Marriott Philadelphia Downtown in <\/span><span style=\"font-weight: 400;\">Philadelphia, Pa. <\/span><span style=\"font-weight: 400;\">EE'nin Bilimsel Dan\u0131\u015fma Kurulu Ba\u015fkan\u0131, Kevin Foskett, PhD,<\/span> <span style=\"font-weight: 400;\">resepsiyona ev sahipli\u011fi yapt\u0131<\/span><span style=\"font-weight: 400;\">EE'nin Ba\u015f Bilimsel Sorumlusu Chandra Ghose, PhD ile toplant\u0131. EE'nin Kurucu Ortaklar\u0131 Emily ve Liza Kramer-Golinkoff, Emily'nin KF hastal\u0131\u011f\u0131n\u0131n ileri a\u015famalar\u0131 g\u00f6z \u00f6n\u00fcne al\u0131nd\u0131\u011f\u0131nda COVID-19 \u00f6nlemleri nedeniyle sanal olarak kat\u0131ld\u0131lar. Emily'nin k\u0131z karde\u015fi Julia, erkek karde\u015fi Coby ve onun <\/span><span style=\"font-weight: 400;\">N\u0130\u015eANLI<\/span> <span style=\"font-weight: 400;\">Lexi, EE ekibinin \u00e7e\u015fitli \u00fcyeleriyle birlikte etkinlikte Kramer-Golinkoff ailesini temsil etti. <\/span><span style=\"font-weight: 400;\">Etkinlikte ayr\u0131ca EE'nin kistik fibrozis (KF) ara\u015ft\u0131rmalar\u0131 ve ila\u00e7 geli\u015ftirme alan\u0131nda yenilik\u00e7i de\u011fi\u015fimcileri \u00f6d\u00fcllendirdi\u011fi 2022 Trailblazer \u00d6d\u00fcl\u00fc de takdim edildi.<\/span><\/p>\n<p><iframe title=\"Emily&#039;s Entourage | Kuzey Amerika Kistik Fibrozis Konferans\u0131\" width=\"960\" height=\"540\" src=\"https:\/\/www.youtube.com\/embed\/Vn5pHTyEID0?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe><\/p>\n<p style=\"text-align: justify;\"><span style=\"font-weight: 400;\">Kistik Fibrozis Vakf\u0131 taraf\u0131ndan her y\u0131l d\u00fczenlenen NACFC, KF ara\u015ft\u0131rmalar\u0131, bak\u0131m\u0131 ve ila\u00e7 geli\u015ftirmedeki en son geli\u015fmeleri tart\u0131\u015fmak ve KF'li ki\u015filerin sa\u011fl\u0131\u011f\u0131n\u0131 ve genel ya\u015fam kalitesini iyile\u015ftirmenin yollar\u0131 hakk\u0131nda fikir al\u0131\u015fveri\u015finde bulunmak i\u00e7in d\u00fcnyan\u0131n d\u00f6rt bir yan\u0131ndan bilim insanlar\u0131n\u0131, klinisyenleri ve bak\u0131c\u0131lar\u0131 bir araya getiriyor.<\/span><\/p>\n<p style=\"text-align: justify;\"><span style=\"font-weight: 400;\">Bug\u00fcne kadarki en y\u00fcksek kat\u0131l\u0131m\u0131n ger\u00e7ekle\u015fti\u011fi NACFC'deki bu y\u0131lki EE kokteyline yakla\u015f\u0131k 100 ara\u015ft\u0131rmac\u0131, bilim insan\u0131, KF'li ki\u015filerin aile \u00fcyeleri ve ila\u00e7 ve biyoteknoloji \u015firketlerinden temsilciler kat\u0131ld\u0131. Etkinlik EE'nin ba\u015far\u0131lar\u0131n\u0131 kutlad\u0131, se\u00e7kin bilim toplulu\u011funu tan\u0131d\u0131 ve onurland\u0131rd\u0131 ve fikir al\u0131\u015fveri\u015fi i\u00e7in ideal bir atmosfer sa\u011flad\u0131. Kat\u0131l\u0131mc\u0131lar a\u011f kurup yeniden ba\u011flant\u0131 kurarken salonda canl\u0131 bir v\u0131z\u0131lt\u0131 vard\u0131 - bu da grubun EE'nin at\u0131l\u0131mlar\u0131 h\u0131zland\u0131rma ve KF'nin sa\u00e7ma mutasyonlar\u0131 i\u00e7in bir tedavi bulma misyonuna olan ortak ba\u011fl\u0131l\u0131\u011f\u0131n\u0131n bir kan\u0131t\u0131d\u0131r.\u00a0<\/span><b>\u00a0<\/b><\/p>\n<div id=\"attachment_18080\" style=\"width: 2570px\" class=\"wp-caption aligncenter\"><img fetchpriority=\"high\" decoding=\"async\" aria-describedby=\"caption-attachment-18080\" class=\"wp-image-18080 size-full\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/3-scaled.jpg\" alt=\"\" width=\"2560\" height=\"1707\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/3-scaled.jpg 2560w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/3-300x200.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/3-1024x683.jpg 1024w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/3-768x512.jpg 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/3-1536x1024.jpg 1536w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/3-2048x1365.jpg 2048w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/3-18x12.jpg 18w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/3-600x400.jpg 600w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><p id=\"caption-attachment-18080\" class=\"wp-caption-text\"><em>\u00a0Liza ve Emily, EE NACFC resepsiyonunda konuklar\u0131 sanal olarak kar\u015f\u0131l\u0131yor.<\/em><\/p><\/div>\n<p style=\"text-align: justify;\"><span style=\"font-weight: 400;\">Etkinlik Emily ve Liza'n\u0131n a\u00e7\u0131l\u0131\u015f konu\u015fmalar\u0131yla ba\u015flad\u0131 - heyecanlar\u0131 ve minnettarl\u0131klar\u0131 projekt\u00f6r ekran\u0131ndan hissediliyordu! Program devam ederken, EE'nin Ba\u015f Bilimsel Sorumlusu Dr. <\/span><span style=\"font-weight: 400;\">Chandra Ghose, sundu<\/span> <span style=\"font-weight: 400;\">Dr. Jennifer Taylor-Cousar, <\/span><span style=\"font-weight: 400;\">MD, MSCS, ATSF, National Jewish Health'te pediatrik ve yeti\u015fkin g\u00f6\u011f\u00fcs hastal\u0131klar\u0131 uzman\u0131 ve EE'nin Bilimsel Dan\u0131\u015fma Kurulu \u00fcyesi,<\/span><span style=\"font-weight: 400;\"> EE'nin 2022 Trailblazer \u00d6d\u00fcl\u00fc ile \u00f6d\u00fcllendirildi. <\/span><span style=\"font-weight: 400;\">\u00d6d\u00fcl, EV ile ortakl\u0131k kuran ve a\u015fa\u011f\u0131daki konularda faaliyet g\u00f6steren bir ki\u015fi veya kurulu\u015fa verilmektedir<\/span><span style=\"font-weight: 400;\">al\u0131\u015f\u0131lagelmi\u015f s\u0131n\u0131rlar\u0131 zorlamak ve KF'li insanlar i\u00e7in hayat kurtaran ara\u015ft\u0131rma ilerlemelerini te\u015fvik etmek i\u00e7in cesaret, azim ve ezber bozan yarat\u0131c\u0131l\u0131k. \u00d6d\u00fcl\u00fcn ge\u00e7mi\u015fteki sahipleri aras\u0131nda Dr. Kevin Fostkett de bulunmaktad\u0131r, <\/span><span style=\"font-weight: 400;\">Isaac Ott Fizyoloji Profes\u00f6r\u00fc ve Pennsylvania \u00dcniversitesi Perelman T\u0131p Fak\u00fcltesi Fizyoloji B\u00f6l\u00fcm\u00fc Ba\u015fkan\u0131, <\/span><span style=\"font-weight: 400;\">ve Vertex'in Ara\u015ft\u0131rmadan Sorumlu K\u0131demli Ba\u015fkan Yard\u0131mc\u0131s\u0131 Dr. Paul Negulescu.<\/span><\/p>\n<div id=\"attachment_18081\" style=\"width: 693px\" class=\"wp-caption aligncenter\"><img decoding=\"async\" aria-describedby=\"caption-attachment-18081\" class=\"wp-image-18081 size-large\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/4-683x1024.jpg\" alt=\"\" width=\"683\" height=\"1024\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/4-683x1024.jpg 683w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/4-200x300.jpg 200w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/4-768x1152.jpg 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/4-1024x1536.jpg 1024w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/4-1365x2048.jpg 1365w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/4-8x12.jpg 8w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/4-600x900.jpg 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/4-scaled.jpg 1707w\" sizes=\"(max-width: 683px) 100vw, 683px\" \/><p id=\"caption-attachment-18081\" class=\"wp-caption-text\"><em>\u00a0EE'nin Ba\u015f Bilim Sorumlusu Chandra Ghose, 2022 Trailblazer \u00d6d\u00fcl\u00fc sahibi Dr. Jennifer Taylor-Cousar ile birlikte.<\/em><\/p><\/div>\n<blockquote><p><i><span style=\"font-weight: 400;\">Emily's Entourage'\u0131n kurucu orta\u011f\u0131 Emily Kramer-Golinkoff, \"Jennifer \u015fefkatli bir doktor, parlak bir ara\u015ft\u0131rmac\u0131, \u00e7ok say\u0131da yay\u0131n\u0131 olan bir yazar ve KF toplulu\u011funun ate\u015fli bir savunucusu,\" dedi. \"Benimki de dahil olmak \u00fczere her g\u00fcn KF'li pek \u00e7ok insan\u0131n hayat\u0131nda yaratt\u0131\u011f\u0131 tarifsiz etkiye sonsuz bir hayranl\u0131k duyuyorum. Bu y\u0131lki Trailblazer \u00d6d\u00fcl\u00fc'n\u00fc ona takdim etmek benim i\u00e7in bir onurdu.\"<\/span><\/i><\/p><\/blockquote>\n<div id=\"attachment_18085\" style=\"width: 970px\" class=\"wp-caption aligncenter\"><img decoding=\"async\" aria-describedby=\"caption-attachment-18085\" class=\"wp-image-18085 size-large\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/5b-1024x1024.jpg\" alt=\"\" width=\"960\" height=\"960\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/5b-1024x1024.jpg 1024w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/5b-300x300.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/5b-150x150.jpg 150w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/5b-768x768.jpg 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/5b-12x12.jpg 12w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/5b-600x600.jpg 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/5b-100x100.jpg 100w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/5b.jpg 1440w\" sizes=\"(max-width: 960px) 100vw, 960px\" \/><p id=\"caption-attachment-18085\" class=\"wp-caption-text\"><em>Bu y\u0131lki etkinli\u011fin anlaml\u0131 konumu, EE'nin memleketi Philadelphia. Philadelphia temal\u0131 at\u0131\u015ft\u0131rmal\u0131klar (Campos'tan cheesesteak'ler ve tastykake'ler) ve mekan\u0131n etraf\u0131ndaki ger\u00e7eklerle vurguland\u0131.<\/em><\/p><\/div>\n<p style=\"text-align: justify;\"><span style=\"font-weight: 400;\">EE, bu resepsiyonun KF toplulu\u011fu i\u00e7in kritik ara\u015ft\u0131rma ve ila\u00e7 geli\u015ftirmeye odaklanan \u00f6nemli, bilgilendirici ve ilham verici oturumlar ve etkinliklerle dolu birka\u00e7 g\u00fcn olan NACFC'nin genel manzaras\u0131n\u0131n bir par\u00e7as\u0131 olabilece\u011fi i\u00e7in minnettard\u0131r. <\/span><span style=\"font-weight: 400;\">KF toplulu\u011funun mevcut CFTR mod\u00fclat\u00f6rlerinden faydalanamayan \"son 10% \"sine zamanlar\u0131n\u0131 ve enerjilerini ay\u0131rmay\u0131 se\u00e7en bu kadar tutkulu, ak\u0131ll\u0131, yetenekli ve derinden ba\u011fl\u0131 insanlar\u0131n kat\u0131l\u0131m\u0131, t\u00fcm EE ekibine \u00f6l\u00e7\u00fclemez bir umut verdi. EE, NACFC resepsiyonunda ate\u015flenen ba\u011flant\u0131lar\u0131n ve ba\u015flat\u0131lan konu\u015fmalar\u0131n KF'li insanlar\u0131n son 10%'si i\u00e7in daha fazla terap\u00f6tik geli\u015fime yol a\u00e7aca\u011f\u0131n\u0131 i\u00e7tenlikle umuyor ve inan\u0131yor ve elimizden geldi\u011fince yard\u0131m etmeye haz\u0131r\u0131z.<\/span><span style=\"font-weight: 400;\">\u00a0<\/span><\/p>\n<p style=\"text-align: justify;\"><span style=\"font-weight: 400;\">Emily's Entourage ayr\u0131ca NACFC'deki resepsiyona ev sahipli\u011fi yapma f\u0131rsat\u0131 i\u00e7in Kistik Fibrozis Vakf\u0131'na i\u00e7tenlikle te\u015fekk\u00fcr eder.<\/span><\/p>\n<blockquote>\n<p style=\"text-align: left;\"><i><span style=\"font-weight: 400;\">\"<\/span><\/i><i><span style=\"font-weight: 400;\">Resepsiyondan, al\u0131\u015f\u0131lm\u0131\u015f\u0131n d\u0131\u015f\u0131nda d\u00fc\u015f\u00fcnmek ve KF'li her bir ki\u015fi i\u00e7in hayat kurtaran bulu\u015flar elde edene kadar benzersiz bir h\u0131z ve odaklanma ile \u00e7al\u0131\u015fmak i\u00e7in enerjik hissederek ayr\u0131ld\u0131\u011f\u0131n\u0131z\u0131 umuyoruz.\"<\/span><\/i><\/p>\n<p style=\"text-align: left;\"><i>- Emily Kramer-Golinkoff, Emily's Entourage'\u0131n kurucu orta\u011f\u0131<\/i><\/p>\n<\/blockquote>\n<p style=\"text-align: justify;\">","protected":false},"excerpt":{"rendered":"<p>2019'dan bu yana ilk kez y\u00fcz y\u00fcze d\u00fczenlenen ve sadece davetlilerin kat\u0131ld\u0131\u011f\u0131 resepsiyon, EE'nin bug\u00fcne kadarki ba\u015far\u0131lar\u0131n\u0131 kutlamak, se\u00e7kin bilim toplulu\u011funu tan\u0131mak ve onurland\u0131rmak ve EE'nin misyonu \u00fczerine d\u00fc\u015f\u00fcnmek i\u00e7in kistik fibrozis (KF) toplulu\u011fu \u00fcyelerini bir araya getirdi Emily's Entourage (EE), Kuzey Amerika Kistik Fibrozis Konferans\u0131'nda 5. Y\u0131ll\u0131k, sadece davetlilerin kat\u0131ld\u0131\u011f\u0131 kokteyline ev sahipli\u011fi yapt\u0131... <\/p>\n<div class=\"clear\"><\/div>\n<p><a href=\"https:\/\/www.emilysentourage.org\/tr\/emilys-entourage-ee-hosted-5th-annual-cocktail-reception-at-nacfc-2022\/\" class=\"excerpt-read-more\">Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1361,"featured_media":18077,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_titles_title":"Emily\u2019s Entourage (EE) Hosted 5th Annual Cocktail Reception at NACFC 2022","_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-18073","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\/2-scaled.jpg","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/18073","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=18073"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/18073\/revisions"}],"predecessor-version":[{"id":20188,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/18073\/revisions\/20188"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/18077"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=18073"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=18073"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=18073"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}