{"id":15542,"date":"2021-05-14T15:31:13","date_gmt":"2021-05-14T19:31:13","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?page_id=15542"},"modified":"2023-12-20T05:55:37","modified_gmt":"2023-12-20T10:55:37","slug":"press-release-5-14-21","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/press-release-5-14-21\/","title":{"rendered":"EE \"Sihirli \u00c7izgi \"yi Sunuyor: Kistik Fibrozis Olmadan Bir Gelecek \u00c7izmek\""},"content":{"rendered":"

Sanal Bir Etkinlik Olan Emily Entourage'\u0131n 6. Y\u0131ll\u0131k EENY Program\u0131 Kistik Fibrozis Ara\u015ft\u0131rmalar\u0131 \u0130\u00e7in Kritik Fonlar Topluyor<\/em><\/h3>\n

New York, NY - Kistik Fibrozis (KF) i\u00e7in ara\u015ft\u0131rma ve ila\u00e7 geli\u015ftirmeyi h\u0131zland\u0131rmak amac\u0131yla 2011 y\u0131l\u0131ndan bu yana milyonlarca dolar toplayan yenilik\u00e7i bir 501(c)3 vakf\u0131 olan Emily's Entourage (EE), sanal bir etkinli\u011fi duyurmaktan gurur duyar, \"Sihirli Hat: Kistik Fibrozis Olmadan Bir Gelecek \u00c7izmek\" <\/em><\/strong>\u00fczerinde 19 May\u0131s \u00c7ar\u015famba, saat 20:00 ET<\/strong>.<\/p>\n

Etkinli\u011fin ev sahipli\u011fini yazar, yap\u0131mc\u0131, oyuncu, yat\u0131r\u0131mc\u0131 ve moda markas\u0131 kurucusu Erin Foster<\/a> EE kurucu orta\u011f\u0131 Emily Kramer-Golinkoff ve ABC News \u0130\u015f, Teknoloji ve Ekonomi muhabiri ile bir r\u00f6portaj da yer alacak, Rebecca Jarvis<\/a>. Etkinlikte ayr\u0131ca KF toplulu\u011fundan sesler, \u00fcnl\u00fclerin cameolar\u0131 ve David Shaw'\u0131n m\u00fczik performanslar\u0131 yer al\u0131yor. Dirili\u015f\u00e7iler<\/a>,\u00a0Brianna Collichio<\/a>, Luvrs<\/a>ve daha fazlas\u0131.<\/p>\n

Y\u0131ll\u0131k etkinlik, EE'nin hayat kurtaran yeni tedavileri h\u0131zland\u0131rma ve mevcut hedefe y\u00f6nelik tedavilerden yararlanamayan nadir KF mutasyonlar\u0131na sahip ki\u015filer i\u00e7in bir tedavi bulma misyonunu destekleyen gen\u00e7, profesyonel New Yorklulardan olu\u015fan bir topluluk olan EENY taraf\u0131ndan sunulmaktad\u0131r. Bu y\u0131l\u0131n temas\u0131 olan KF'siz Bir Gelecek \u00c7izmek, EE'nin \"Sihirli Hat<\/a>\" kampanyas\u0131, pop\u00fcler \u00e7ocuk kitab\u0131 \"Harold and the Purple Crayon \"dan ilham al\u0131yor. Harold'un mor boya kalemi hayal g\u00fcc\u00fcn\u00fcn izin verdi\u011fi her \u015feyi \u00e7izmesine olanak sa\u011fl\u0131yordu. Etkinlik temas\u0131 bize hayal etti\u011fimiz d\u00fcnyay\u0131 - CF'siz bir d\u00fcnya - yaratma g\u00fcc\u00fcm\u00fcz\u00fc hat\u0131rlat\u0131yor.<\/p>\n

\"KF pop\u00fclasyonunun 90%'si i\u00e7in devrim niteli\u011finde yeni hedefe y\u00f6nelik tedaviler mevcuttur. Ne yaz\u0131k ki, nadir g\u00f6r\u00fclen nonsense KF mutasyonlar\u0131na sahip olanlar, bu yeni tedavilerden fayda g\u00f6rmeyen 10% grubunda yer almaktad\u0131r. EE olarak, KF'li herkesin gelecek ve derin bir nefes i\u00e7in ger\u00e7ek\u00e7i bir umudu hak etti\u011fine inan\u0131yoruz ve bunu ba\u015farmak bizim elimizde. Bu nedenle, hayat kurtaran at\u0131l\u0131mlar\u0131 h\u0131zland\u0131rmaya ve KF toplulu\u011funun son 10%'si i\u00e7in bir tedaviye odaklan\u0131yoruz, b\u00f6ylece hayal etti\u011fimiz gelece\u011fi - KF'siz bir gelecek - yaratabiliriz.\" diyor EE Kurucu Orta\u011f\u0131 Emily Kramer-Golinkoff.<\/p>\n

Etkinlik, Sunum Sponsoru taraf\u0131ndan m\u00fcmk\u00fcn k\u0131l\u0131nm\u0131\u015ft\u0131r Vertex Pharmaceuticals Inc.<\/a>, Ametist sponsor Genentech, Roche Grubunun Bir \u00dcyesi<\/a>, Violet sponsorlar\u0131 Arrowhead Pharmaceuticals<\/a>, The Points Guy<\/a>, Tito's El Yap\u0131m\u0131 Votka<\/a> ve Viatris<\/a>di\u011ferleriyle birlikte.<\/p>\n

EE, 2011 y\u0131l\u0131nda Emily, ailesi ve arkada\u015flar\u0131 taraf\u0131ndan, \u00f6ncelikle akci\u011ferleri ve sindirim sistemini etkileyen \u00f6l\u00fcmc\u00fcl bir genetik hastal\u0131k olan KF'nin sa\u00e7ma mutasyonlar\u0131na sahip olanlar i\u00e7in at\u0131l\u0131mlar ve bir tedavi bulmak i\u00e7in kendi elleriyle harekete ge\u00e7meye karar verdiklerinde kuruldu. Nonsense mutasyonlar\u0131, KF'liler aras\u0131nda nadir g\u00f6r\u00fclmekle birlikte, t\u00fcm genetik hastal\u0131klar\u0131n yakla\u015f\u0131k 12%'sinin nedenidir ve d\u00fcnya \u00e7ap\u0131nda yakla\u015f\u0131k 30 milyon insan\u0131 etkilemektedir. EE'nin devrim niteli\u011findeki ara\u015ft\u0131rma ve ila\u00e7 geli\u015ftirmesinin etkisi, KF toplulu\u011funun \u00e7ok \u00f6tesinde, belirli kas distrofisi t\u00fcrleri, kan bozukluklar\u0131 ve hatta baz\u0131 kanser t\u00fcrleri de dahil olmak \u00fczere sa\u00e7ma mutasyonlar\u0131n neden oldu\u011fu \u00e7ok \u00e7e\u015fitli genetik hastal\u0131klara sahip olanlara kadar uzanma potansiyeline sahiptir.<\/p>\n

Bu y\u0131lki sanal etkinlik arac\u0131l\u0131\u011f\u0131yla toplanan fonlar, EE'nin hayat kurtaran ara\u015ft\u0131rmalar\u0131n\u0131 ilerleterek KF i\u00e7in at\u0131l\u0131mlar\u0131 ve tedaviyi h\u0131zland\u0131racakt\u0131r. Etkinlik \u00fccretsizdir, ancak kay\u0131t gereklidir. Daha fazla bilgi almak, kay\u0131t yapt\u0131rmak ve sponsorluk sat\u0131n almak i\u00e7in l\u00fctfen \u015fu adresi ziyaret edin: www.emilysentourage.org\/eeny<\/a>.<\/p>\n

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

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

Emily's Entourage (EE), \u00f6ncelikle akci\u011ferleri ve sindirim sistemini etkileyen \u00f6l\u00fcmc\u00fcl bir genetik hastal\u0131k olan Kistik Fibrozis'in (KF) sa\u00e7ma mutasyonlar\u0131 i\u00e7in yeni tedaviler ve bir tedavi i\u00e7in ara\u015ft\u0131rmalar\u0131 h\u0131zland\u0131ran yenilik\u00e7i bir 501(c)3 vakf\u0131d\u0131r. EE, 2011 y\u0131l\u0131ndan bu yana milyonlarca dolarl\u0131k ara\u015ft\u0131rma hibesi vermi\u015f, b\u00fcy\u00fck bir ila\u00e7 \u015firketi taraf\u0131ndan sat\u0131n al\u0131nan bir KF gen terapisi \u015firketi kurmu\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, The New York Times, STAT, CNN, People ve daha fazlas\u0131 dahil olmak \u00fczere ulusal medyada yer alm\u0131\u015ft\u0131r.<\/p>\n

Medya sorular\u0131 ve r\u00f6portaj f\u0131rsatlar\u0131 i\u00e7in l\u00fctfen admin@emilysentourage.org adresine e-posta g\u00f6nderin. <\/span><\/i>Video ve y\u00fcksek \u00e7\u00f6z\u00fcn\u00fcrl\u00fckl\u00fc g\u00f6rseller talep \u00fczerine temin edilebilir. <\/span><\/i><\/p>","protected":false},"excerpt":{"rendered":"

Sanal Bir Etkinlik Olan Emily Entourage'\u0131n 6. Y\u0131ll\u0131k EENY Program\u0131 Kistik Fibrozis Ara\u015ft\u0131rmalar\u0131 \u0130\u00e7in Kritik Fonlar Topluyor New York, NY - Kistik Fibrozis (KF) i\u00e7in ara\u015ft\u0131rma ve ila\u00e7 geli\u015ftirmeyi h\u0131zland\u0131rmak amac\u0131yla 2011 y\u0131l\u0131ndan bu yana milyonlarca dolar toplayan yenilik\u00e7i bir 501(c)3 vakf\u0131 olan Emily's Entourage (EE), \u201cThe Magic Line:... <\/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":"","_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,"_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-15542","post","type-post","status-publish","format-standard","hentry","category-press-releases"],"acf":[],"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"","post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/15542","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=15542"}],"version-history":[{"count":2,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/15542\/revisions"}],"predecessor-version":[{"id":20559,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/15542\/revisions\/20559"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=15542"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=15542"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=15542"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}