{"id":17377,"date":"2022-09-29T09:00:58","date_gmt":"2022-09-29T13:00:58","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?page_id=17377"},"modified":"2023-12-20T05:16:54","modified_gmt":"2023-12-20T10:16:54","slug":"emilys-entourage-gets-creative-to-host-11th-annual-gala-in-a-post-covid-world","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/emilys-entourage-gets-creative-to-host-11th-annual-gala-in-a-post-covid-world\/","title":{"rendered":"Emily's Entourage Covid Sonras\u0131 D\u00fcnyada 11. Y\u0131ll\u0131k Galaya Ev Sahipli\u011fi Yapmak \u0130\u00e7in Yarat\u0131c\u0131 Oluyor"},"content":{"rendered":"

Etkinlik, kistik fibrozis i\u00e7in \u00e7\u0131\u011f\u0131r a\u00e7an ara\u015ft\u0131rmalar\u0131 h\u0131zland\u0131rmak i\u00e7in toplanan $10 milyondan fazla para da dahil olmak \u00fczere 11 y\u0131ll\u0131k etkiyi kutlayacak\u00a0<\/i><\/strong><\/h3>\n

Kurucu ortak ve ailesi - Mart 2020'den bu yana t\u0131bbi olarak s\u0131k\u0131 bir karantina alt\u0131nda - y\u0131ll\u0131k konu\u015fmaya kat\u0131lacak ve sahadaki g\u00f6zlerden uzak \u00e7ad\u0131rdan canl\u0131 yay\u0131n yapacak<\/strong><\/em><\/h3>\n

A\u015fa\u011f\u0131 Merion, PA (<\/b>29 Eyl\u00fcl 2022)<\/b> - \u0130leri evre akci\u011fer hastal\u0131\u011f\u0131 olan bir kad\u0131n taraf\u0131ndan y\u00f6netilen sa\u011fl\u0131k temelli bir k\u00e2r amac\u0131 g\u00fctmeyen kurulu\u015f, Covid sonras\u0131 d\u00fcnyada destek\u00e7ilerini nas\u0131l sorumlu bir \u015fekilde bir araya getirir? Hayat kurtaran mutasyon hedefli tedavilerden yararlanamayan son 10% kistik fibrozis (KF) hastas\u0131 i\u00e7in yeni tedaviler ve tedavi ara\u015ft\u0131rmalar\u0131n\u0131 h\u0131zland\u0131ran 501(c)3 vakf\u0131 Emily's Entourage (EE) yarat\u0131c\u0131 olmaya ba\u015flad\u0131.<\/span><\/p>\n

EE, 13 Ekim 2022 Per\u015fembe g\u00fcn\u00fc 11. y\u0131ll\u0131k Evening with Emily's Entourage galas\u0131 olan \"The Flight of the Monarch \"a ev sahipli\u011fi yapacak ve ge\u00e7mi\u015f y\u0131llardan \u00e7ok daha farkl\u0131 g\u00f6r\u00fcnecek. Geleneksel olarak Aral\u0131k ay\u0131nda d\u00fczenlenen resmi gala, bu y\u0131l Mann Sahne Sanatlar\u0131 Merkezi'nde a\u00e7\u0131k havada yap\u0131lacak ve yeni formata uyum sa\u011flamak i\u00e7in Ekim ay\u0131na al\u0131nd\u0131. Ancak bu y\u0131lki en benzersiz de\u011fi\u015fiklik, kimlerin ve nas\u0131l kat\u0131laca\u011f\u0131.\u00a0<\/span><\/p>\n

\"\"

Emily Kramer-Golinkoff konu\u015fmas\u0131n\u0131 Mann Center'da bir tepenin \u00fczerindeki g\u00f6zlerden uzak bir \u00e7ad\u0131rdan canl\u0131 olarak yapacak.<\/p><\/div>\n

EE'nin kurucu orta\u011f\u0131, 37 ya\u015f\u0131ndaki ileri evre KF hastas\u0131 Emily Kramer-Golinkoff, Covid tehdidinden korunmak i\u00e7in Mart 2020'den bu yana ailesiyle birlikte s\u0131k\u0131 bir karantina alt\u0131nda. Ziyaret\u00e7i yok, market gezisi yok ve kesinlikle gala yok - de\u011fil mi? Emily ve ailesi, EE'ye on y\u0131l\u0131 a\u015fk\u0131n bir s\u00fcredir g\u00fc\u00e7 veren inovasyon ve yarat\u0131c\u0131 d\u00fc\u015f\u00fcnceye uygun olarak, geceye g\u00fcvenli bir \u015fekilde kat\u0131lmalar\u0131n\u0131 sa\u011flayan bir \u00e7\u00f6z\u00fcm geli\u015ftirdiler. Kramer-Golinkoff'lar Mann Center'daki kat\u0131l\u0131mc\u0131lara bir tepenin \u00fczerindeki g\u00f6zlerden uzak bir \u00e7ad\u0131rdan kat\u0131lacak, burada EE destek\u00e7ilerini uzaktan selamlayacak ve ak\u015fam boyunca canl\u0131 yay\u0131nlanan program\u0131 izleyecekler. Emily ayr\u0131ca merakla beklenen canl\u0131 konu\u015fmas\u0131n\u0131 da uzak bir noktadan yapacak.\u00a0<\/span><\/p>\n

Emily's Entourage Kurucu Orta\u011f\u0131 Emily Kramer-Golinkoff, \"On y\u0131ldan uzun bir s\u00fcre \u00f6nce, EE \u00e7aresizlikten do\u011fdu ve y\u0131llar i\u00e7inde bu \u00e7aresizli\u011fin inan\u0131lmaz miktarda yenilik ve yarat\u0131c\u0131l\u0131\u011f\u0131 te\u015fvik edebilece\u011fini g\u00f6rd\u00fck\" dedi. \"Sa\u011fl\u0131k temelli bir kar amac\u0131 g\u00fctmeyen kurulu\u015f olarak, y\u00fczlerce destek\u00e7imizi kapal\u0131 bir mekanda sorumlu bir \u015fekilde toplayabilece\u011fimizi d\u00fc\u015f\u00fcnmedik, bu y\u00fczden do\u011fa\u00e7lama yapt\u0131k. Ger\u00e7ek EE tarz\u0131nda, bir engel g\u00f6rmedik, i\u015fleri de\u011fi\u015ftirmek ve galaya yeni, taze bir \u015fekilde yakla\u015fmak i\u00e7in bir f\u0131rsat g\u00f6rd\u00fck.\"<\/span><\/p>\n

Emily's Entourage, kuruldu\u011fu 2011 y\u0131l\u0131ndan bu yana 25 ara\u015ft\u0131rma hibesini finanse etmi\u015f, $37,8+ milyon devam fonu sa\u011flam\u0131\u015f, klinik deneylere kat\u0131l\u0131m\u0131 h\u0131zland\u0131rmak i\u00e7in bir KF sa\u00e7ma mutasyon hasta kayd\u0131 ve klinik deney e\u015fle\u015ftirme program\u0131 olu\u015fturmu\u015f ve Spirovant (eski ad\u0131yla Talee Bio) ad\u0131nda bir KF gen terapisi \u015firketi kurmu\u015ftur.<\/span><\/p>\n

Bu y\u0131lki Evening with Emily's Entourage galas\u0131, \"The Flight of the Monarch\", Sunum sponsoru Vertex Pharmaceuticals Inc; R\u00fcya Tak\u0131m sponsoru cystetic Medicines, Inc; ve Violet sponsorlar\u0131 AbbVie Inc, Bloomberg Philanthropies, Boehringer Ingelheim, Enterprise Therapeutics Ltd, Lovely, ReCode Therapeutics, Spirovant Sciences, Tito's Handmade Vodka ve Viatris taraf\u0131ndan m\u00fcmk\u00fcn k\u0131l\u0131nm\u0131\u015ft\u0131r. Marcia ve Ned Kaplin ile Ivy ve Matthew Solomon onursal e\u015f ba\u015fkanlar olarak kabul edilecektir.<\/span><\/p>\n

Bu y\u0131lki etkinlikte toplanan fonlar, Emily's Entourage'\u0131n hayat kurtaran yeni tedavileri h\u0131zland\u0131rma ve nonsense mutasyonlar\u0131 olanlar da dahil olmak \u00fczere KF toplulu\u011funun son 10%'si i\u00e7in bir tedavi bulma konusundaki tekil misyonunu desteklemektedir. Etkinlik detaylar\u0131 hakk\u0131nda daha fazla bilgi edinmek ve kat\u0131lmak \u00fczere bilet sat\u0131n almak i\u00e7in l\u00fctfen \u015fu adresi ziyaret edin <\/span>www.emilysentourage.org\/phillygala22<\/span><\/a>.\u00a0<\/span><\/p>\n

###<\/span><\/p>\n

Emily'nin \u00c7evresi Hakk\u0131nda<\/b><\/p>\n

Emily's Entourage, KF'nin nonsense mutasyonlar\u0131na sahip olanlar da dahil olmak \u00fczere mevcut mutasyon hedefli tedavilerden fayda g\u00f6rmeyen kistik fibrozis (KF) pop\u00fclasyonunun son 10%'sindeki bireyler i\u00e7in yeni tedaviler ve bir tedavi i\u00e7in ara\u015ft\u0131rmalar\u0131 h\u0131zland\u0131ran yenilik\u00e7i bir 501(c)3't\u00fcr. Emily's Entourage 2011 y\u0131l\u0131ndan bu yana milyonlarca dolarl\u0131k ara\u015ft\u0131rma hibesi vermi\u015f, bir KF gen terapisi \u015firketi kurmu\u015f, klinik deneylere kat\u0131l\u0131m\u0131 h\u0131zland\u0131rmak i\u00e7in bir hasta kay\u0131t defteri ve klinik deney e\u015fle\u015ftirme program\u0131 geli\u015ftirmi\u015f ve d\u00fcnya \u00e7ap\u0131nda y\u00fcksek etkili ara\u015ft\u0131rma ve ila\u00e7 geli\u015ftirme \u00e7abalar\u0131na \u00f6nc\u00fcl\u00fck etmi\u015ftir. Kurulu\u015f, New York Times, STAT, CNN, People ve daha fazlas\u0131 dahil olmak \u00fczere ulusal medyada yer alm\u0131\u015ft\u0131r. Daha fazla bilgi i\u00e7in <\/span>emilysentourage.org<\/span><\/a>.\u00a0<\/span><\/p>\n

Medya \u0130leti\u015fim<\/b><\/p>\n

Ashling Knight<\/span><\/p>\n

Pazarlama ve \u0130leti\u015fim Direkt\u00f6r\u00fc<\/span><\/p>\n

Emily'nin \u00c7evresi<\/span><\/p>\n

ashling@emilysentourage.org<\/span><\/a><\/p>","protected":false},"excerpt":{"rendered":"

Etkinlik, kistik fibrozis i\u00e7in \u00e7\u0131\u011f\u0131r a\u00e7an ara\u015ft\u0131rmalar\u0131 h\u0131zland\u0131rmak i\u00e7in toplanan $10 milyondan fazla para da dahil olmak \u00fczere 11 y\u0131ll\u0131k etkiyi kutlayacak Kurucu ortak ve ailesi - Mart 2020'den beri t\u0131bbi olarak s\u0131k\u0131 bir karantinada - kat\u0131lacak ve y\u0131ll\u0131k konu\u015fmay\u0131 sahadaki g\u00f6zlerden uzak \u00e7ad\u0131rdan canl\u0131 yay\u0131nlayacak Lower Merion, PA (29 Eyl\u00fcl 2022) - Sa\u011fl\u0131k temelli bir kar amac\u0131 g\u00fctmeyen kurulu\u015f, nas\u0131l... <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1281,"featured_media":0,"comment_status":"closed","ping_status":"closed","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":"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":[178],"tags":[],"class_list":["post-17377","post","type-post","status-publish","format-standard","hentry","category-press-releases"],"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\/17377","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=17377"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/17377\/revisions"}],"predecessor-version":[{"id":20541,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/17377\/revisions\/20541"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=17377"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=17377"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=17377"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}