{"id":23300,"date":"2024-10-02T11:30:40","date_gmt":"2024-10-02T15:30:40","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=23300"},"modified":"2024-10-02T11:53:33","modified_gmt":"2024-10-02T15:53:33","slug":"emilys-entourage-to-host-2024-gala-efflorescence-celebrating-pivotal-breakthroughs-in-the-race-to-develop-lifesaving-therapies-for-the-final-10-of-people-with-cystic-fibrosis","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/emilys-entourage-to-host-2024-gala-efflorescence-celebrating-pivotal-breakthroughs-in-the-race-to-develop-lifesaving-therapies-for-the-final-10-of-people-with-cystic-fibrosis\/","title":{"rendered":"Emily's Entourage, Kistik Fibrozisli \u0130nsanlar\u0131n Son 10%'si i\u00e7in Hayat Kurtaran Tedaviler Geli\u015ftirme Yar\u0131\u015f\u0131ndaki \u00d6nemli At\u0131l\u0131mlar\u0131 Kutlayan \"Efflorescence\" Adl\u0131 2024 Galas\u0131na Ev Sahipli\u011fi Yapacak"},"content":{"rendered":"<p style=\"text-align: center;\"><i>Emily's Entourage'\u0131n y\u0131ll\u0131k galas\u0131, ara\u015ft\u0131rmalardaki ilerlemeleri kutlayarak ve hala etkili tedaviler bekleyen son 10% i\u00e7in hayat kurtaran tedavileri destekleyerek anlaml\u0131 bir etki yaratmak i\u00e7in halk\u0131 bilim liderlerine ve kistik fibrozis toplulu\u011funa kat\u0131lmaya davet ediyor.<\/i><\/p>\n<p><b><img fetchpriority=\"high\" decoding=\"async\" class=\"alignright wp-image-23309\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EE_24_SG_FacebookPost3-819x1024.png\" alt=\"\" width=\"429\" height=\"536\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EE_24_SG_FacebookPost3-819x1024.png 819w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EE_24_SG_FacebookPost3-240x300.png 240w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EE_24_SG_FacebookPost3-768x960.png 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EE_24_SG_FacebookPost3-1229x1536.png 1229w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EE_24_SG_FacebookPost3-1638x2048.png 1638w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EE_24_SG_FacebookPost3-10x12.png 10w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EE_24_SG_FacebookPost3-440x550.png 440w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EE_24_SG_FacebookPost3-600x750.png 600w\" sizes=\"(max-width: 429px) 100vw, 429px\" \/>Philadelphia, Pennsylvania - 2 Ekim 2024<\/b> - Kistik fibrozis (KF) hastalar\u0131n\u0131n son 10%'si i\u00e7in yeni tedaviler ve tedavi ara\u015ft\u0131rmalar\u0131n\u0131 h\u0131zland\u0131ran yenilik\u00e7i bir 501(c)3 kurulu\u015fu olan Emily's Entourage (EE), 5 Ekim 2024 tarihinde Philadelphia'daki The Mann Center for Performing Arts'ta d\u00fczenlenecek olan y\u0131ll\u0131k galas\u0131 \"Efflorescence \"\u0131 duyurdu. Bu y\u0131lki gala, mevcut mutasyon hedefli tedavilerden faydalanamayan ve hala hayat kurtaran tedavileri bekleyenlere umut veren \u00f6nemli geli\u015fmelerle KF ara\u015ft\u0131rmalar\u0131nda verimli bir d\u00f6nemi kutlayacak.<\/p>\n<p>\"\u00c7i\u00e7eklenme\" anlam\u0131na gelen \"Efflorescence\", EE'nin misyonundaki kritik bir noktay\u0131 simgeliyor: 13 y\u0131ll\u0131k temel atma s\u00fcrecinin ard\u0131ndan, kurulu\u015f \u015fu anda mevcut KF tedavileri taraf\u0131ndan geride b\u0131rak\u0131lanlar i\u00e7in kritik at\u0131l\u0131mlar yapman\u0131n e\u015fi\u011finde. EE, kurulu\u015fundan bu yana $15 milyonun \u00fczerinde ba\u011f\u0131\u015f toplayarak, KF toplulu\u011fu i\u00e7inde mevcut tedavilerden yararlanamayanlara (ila\u00e7 geli\u015ftirmede tarihsel olarak g\u00f6z ard\u0131 edilen bir alt grup) odaklanan yenilik\u00e7i ara\u015ft\u0131rmalar\u0131 destekledi.<\/p>\n<p><b>Bu Neden \u00d6nemli? KF Bak\u0131m\u0131nda Kimseyi Geride B\u0131rakmamak<\/b><\/p>\n<p>KF'li \u00e7o\u011fu insan i\u00e7in \u00e7\u0131\u011f\u0131r a\u00e7an mutasyon hedefli tedaviler hayat de\u011fi\u015ftirici olmu\u015ftur. Ancak bu tedavilerden fayda g\u00f6rmeyen geri kalan 10% i\u00e7in ila\u00e7lar hi\u00e7bir fayda sa\u011flam\u0131yor ve onlar\u0131 h\u0131zl\u0131 hastal\u0131k ilerlemesine, ya\u015fam kalitesinin d\u00fc\u015fmesine ve ya\u015fam s\u00fcrelerinin k\u0131salmas\u0131na kar\u015f\u0131 savunmas\u0131z b\u0131rak\u0131yor.<\/p>\n<p>EE'nin kurucu orta\u011f\u0131 ve ileri evre KF ile ya\u015fayan bir ki\u015fi olan Emily Kramer-Golinkoff, MBE, \"Art\u0131k sadece bir at\u0131l\u0131m\u0131n pe\u015finde de\u011filiz\" diyor. \"On y\u0131l\u0131 a\u015fk\u0131n bir s\u00fcredir durmaks\u0131z\u0131n \u00e7al\u0131\u015ft\u0131ktan sonra, nihayet eme\u011fimizin meyvesini g\u00f6r\u00fcyoruz; benim gibi KF toplulu\u011funun son 10%'sinde yer alan ve hayat kurtaran tedaviler i\u00e7in \u00e7ok uzun s\u00fcredir bekleyen insanlar i\u00e7in gelece\u011fi d\u00f6n\u00fc\u015ft\u00fcrebilecek bilimsel ilerlemeler boru hatt\u0131nda ilerliyor.\"<\/p>\n<p>Ge\u00e7ti\u011fimiz y\u0131l boyunca EE, KF'li ki\u015filerin son 10%'si i\u00e7in potansiyel tedavileri ilerletme konusunda kayda de\u011fer bir ilerleme kaydetti. Organizasyon son olarak <a href=\"https:\/\/www.emilysentourage.org\/tr\/ctc\/\" target=\"_blank\" rel=\"noopener\"><b>CF Clinical Trial Connect (CTC)<\/b><\/a>Mevcut CFTR mod\u00fclat\u00f6rlerinden fayda g\u00f6rmeyen bireyleri en yeni klinik ara\u015ft\u0131rmalara ba\u011flamak, i\u015fe al\u0131m zorluklar\u0131n\u0131n \u00fcstesinden gelmek ve potansiyel olarak hayat kurtar\u0131c\u0131 tedavilerin geli\u015ftirilmesini h\u0131zland\u0131rmak i\u00e7in tasarlanm\u0131\u015f k\u00fcresel bir veritaban\u0131.<\/p>\n<p>EE ayr\u0131ca a\u00e7\u0131l\u0131\u015f \u00f6d\u00fcl\u00fcn\u00fc <a href=\"https:\/\/www.emilysentourage.org\/tr\/collaborative-grants\/\" target=\"_blank\" rel=\"noopener\">ortak ara\u015ftirma hi\u0307beleri\u0307<\/a>odaklanan y\u00fcksek etkili projelere fon sa\u011flamak <a href=\"https:\/\/www.emilysentourage.org\/tr\/emilys-entourage-awards-858932-in-inaugural-collaborative-research-grant-for-novel-approach-to-targeted-airway-delivery-in-cystic-fibrosis-treatments\/\" target=\"_blank\" rel=\"noopener\">CFTR i\u015flevini geri kazand\u0131rmak i\u00e7in terap\u00f6tik kargo da\u011f\u0131t\u0131m\u0131n\u0131n art\u0131r\u0131lmas\u0131<\/a>ve <a href=\"https:\/\/www.emilysentourage.org\/tr\/emilys-entourage-awards-1487500-research-grant-to-launch-pioneering-phage-clinical-trial-for-combatting-cf-infections\/\" target=\"_blank\" rel=\"noopener\">KF'li ki\u015filerde yayg\u0131n olan antibiyoti\u011fe diren\u00e7li patojenlerle m\u00fccadele etmek i\u00e7in tasarlanm\u0131\u015f yenilik\u00e7i faj tedavileri<\/a>. Yeni, hedefe y\u00f6nelik tedaviler sunma potansiyelleri nedeniyle se\u00e7ilen bu projeler, yetersiz hizmet alan bu grup i\u00e7in tedavi a\u00e7\u0131\u011f\u0131n\u0131 kapatmaya y\u00f6nelik kritik bir ad\u0131m\u0131 temsil etmektedir.<\/p>\n<p>\u0130lerleme sadece bilimsel de\u011fil, ki\u015fiseldir de. Her potansiyel at\u0131l\u0131m\u0131n arkas\u0131nda, bir zamanlar hi\u00e7 olmayan umudu nihayet g\u00f6ren aileler, kar\u015f\u0131lanmam\u0131\u015f ihtiya\u00e7lar nedeniyle harekete ge\u00e7en ara\u015ft\u0131rmac\u0131lar ve KF'nin gelece\u011fini yeniden yazmak i\u00e7in yorulmadan \u00e7al\u0131\u015fan k\u00fcresel bir destek\u00e7i toplulu\u011fu var.<\/p>\n<p><b>Kutlama ve Etkiyi \u0130ki Kat\u0131na \u00c7\u0131karma Gecesi<\/b><\/p>\n<p>Michael'\u0131n sevgi dolu an\u0131s\u0131na Borgioni ailesini onurland\u0131ran bu y\u0131lki Evening with Emily's Entourage galas\u0131, bu harekete kat\u0131lmak ve anlaml\u0131 bir fark yaratmak i\u00e7in derin bir f\u0131rsat sunacak. Konuklar, KF'den etkilenenlerin aile \u00fcyelerinin ki\u015fisel yolculuklar\u0131n\u0131 ve bu hastal\u0131\u011f\u0131n olmad\u0131\u011f\u0131 bir gelece\u011fe dair umutlar\u0131n\u0131 vurgulayan samimi d\u00fc\u015f\u00fcncelerini dinleyecekler.<\/p>\n<p>Kat\u0131l\u0131mc\u0131lar ayn\u0131 zamanda bir etkinlik arac\u0131l\u0131\u011f\u0131yla etkilerini art\u0131rma \u015fans\u0131na da sahip olacaklar. <a href=\"https:\/\/www.emilysentourage.org\/tr\/500kmatch\/\" target=\"_blank\" rel=\"noopener\"><b>$500,000 e\u015fle\u015ftirme m\u00fccadelesi<\/b><\/a>Toplanan her dolar\u0131n e\u015fle\u015ftirilece\u011fi, katk\u0131lar\u0131n etkili bir \u015fekilde ikiye katlanaca\u011f\u0131 ve yeni tedaviler i\u00e7in yar\u0131\u015f\u0131n h\u0131zland\u0131r\u0131laca\u011f\u0131.<\/p>\n<p><b>Biletler genel halka a\u00e7\u0131kt\u0131r<\/b>\u015fahsen kat\u0131lma se\u00e7ene\u011fi ile <a href=\"https:\/\/givebutter.com\/2024galaregistration\" target=\"_blank\" rel=\"noopener\">bilet sat\u0131n alarak<\/a> veya <a href=\"https:\/\/givebutter.com\/2024virtualgalaregistration\" target=\"_blank\" rel=\"noopener\">sanal olarak canl\u0131 yay\u0131n yoluyla<\/a>. Canl\u0131 yay\u0131na kat\u0131l\u0131m \u00fccretsizdir ancak kay\u0131t yapt\u0131r\u0131lmas\u0131 gerekmektedir. Nas\u0131l kat\u0131laca\u011f\u0131n\u0131z hakk\u0131nda daha fazla bilgi almak veya bilet temin etmek i\u00e7in l\u00fctfen \u015fu adresi ziyaret edin <a href=\"https:\/\/www.emilysentourage.org\/tr\/phillygala24\/\" target=\"_blank\" rel=\"noopener\"><b>www.emilysentourage.org\/phillygala24<\/b><\/a>.<\/p>\n<p><b>Etkinlik Detaylar\u0131:<\/b><\/p>\n<ul>\n<li aria-level=\"1\"><b>Tarih<\/b>: Cumartesi, 5 Ekim 2024<\/li>\n<li aria-level=\"1\"><b>Zaman<\/b>: 6:30 Kap\u0131lar A\u00e7\u0131l\u0131yor; 7:15 Program Hemen Ba\u015fl\u0131yor<\/li>\n<li aria-level=\"1\"><b>Konum<\/b>: <a href=\"https:\/\/manncenter.org\/\" target=\"_blank\" rel=\"noopener\">Mann Sahne Sanatlar\u0131 Merkezi<\/a><\/li>\n<li aria-level=\"1\"><b>Biletler &amp; Canl\u0131 Yay\u0131n Kay\u0131tlar\u0131<\/b>: <a href=\"https:\/\/www.emilysentourage.org\/tr\/phillygala24\/\">https:\/\/www.emilysentourage.org\/phillygala24\/<\/a><\/li>\n<\/ul>\n<p>The Evening with Emily's Entourage galas\u0131 a\u015fa\u011f\u0131dakiler taraf\u0131ndan m\u00fcmk\u00fcn k\u0131l\u0131nm\u0131\u015ft\u0131r<b> Sunum sponsoru Vertex Pharmaceuticals, Inc;<\/b> <b>R\u00fcya Tak\u0131m sponsorlar\u0131 Boehringer Ingelheim ve cystetic Medicines, Inc.<\/b>ve<b> Violet sponsorlar\u0131 4D Molecular Therapeutics, Viatris, ReCode Therapeutics, Green Family Foundation &amp; Firstrust Bank, Enterprise Therapeutics Ltd.<\/b>di\u011ferlerinin yan\u0131 s\u0131ra.<\/p>\n<p>Kramer-Golinkoff, \"EE galas\u0131, herkesin hayatlar\u0131 de\u011fi\u015ftiren bir harekete kat\u0131lmas\u0131 i\u00e7in bir f\u0131rsat\" diyor.  \"Bu, umudun, bilimsel at\u0131l\u0131mlar\u0131n ve toplulu\u011fun g\u00fcc\u00fcn\u00fcn bir kutlamas\u0131d\u0131r. Bir araya gelerek, bir zamanlar imkans\u0131z g\u00f6r\u00fcnen bir \u015feyi ger\u00e7e\u011fe d\u00f6n\u00fc\u015ft\u00fcr\u00fcyoruz: KF toplulu\u011funun son 10%'sinde nefeslerini tutarak bekleyenler i\u00e7in \u00e7\u0131\u011f\u0131r a\u00e7an tedaviler.\"<\/p>\n<p>&nbsp;<\/p>\n<p><b>Emily'nin \u00c7evresi Hakk\u0131nda<\/b><\/p>\n<p>Emily's Entourage, mevcut mutasyon hedefli tedavilerden yararlanamayan 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, \u015fu anda sat\u0131n al\u0131nan bir KF gen terapisi \u015firketini kurmu\u015f, klinik deneylere kat\u0131l\u0131m\u0131 h\u0131zland\u0131rmak i\u00e7in bir hasta veri taban\u0131 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<a href=\"https:\/\/www.emilysentourage.org\/tr\/\"> emilysentourage.org<\/a>.<\/p>\n<p><i>\u00a0<\/i><\/p>\n<p><b>Medya \u0130leti\u015fim<\/b><\/p>\n<p>Hannah Kleckner<\/p>\n<p>Pazarlama ve \u0130leti\u015fim Direkt\u00f6r\u00fc<\/p>\n<p>hannah@emilysentourage.org<\/p>","protected":false},"excerpt":{"rendered":"<p>Emily's Entourage'\u0131n y\u0131ll\u0131k galas\u0131, ara\u015ft\u0131rmalardaki ilerlemeleri kutlayarak ve hala etkili tedaviler bekleyen son 10% i\u00e7in hayat kurtaran tedavileri destekleyerek anlaml\u0131 bir etki yaratmak i\u00e7in halk\u0131 bilim liderlerine ve kistik fibrozis toplulu\u011funa kat\u0131lmaya davet ediyor. Philadelphia, Pennsylvania - 2 Ekim 2024 - Emily's Entourage (EE), kistik fibrozis i\u00e7in ara\u015ft\u0131rmalar\u0131 h\u0131zland\u0131ran yenilik\u00e7i bir 501(c)3... <\/p>\n<div class=\"clear\"><\/div>\n<p><a href=\"https:\/\/www.emilysentourage.org\/tr\/emilys-entourage-to-host-2024-gala-efflorescence-celebrating-pivotal-breakthroughs-in-the-race-to-develop-lifesaving-therapies-for-the-final-10-of-people-with-cystic-fibrosis\/\" class=\"excerpt-read-more\">Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1719,"featured_media":23309,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_titles_title":"","_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":"","_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-23300","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-press-releases"],"acf":[],"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EE_24_SG_FacebookPost3.png","post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/23300","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\/1719"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=23300"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/23300\/revisions"}],"predecessor-version":[{"id":23313,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/23300\/revisions\/23313"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/23309"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=23300"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=23300"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=23300"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}