{"id":21113,"date":"2024-06-12T09:00:31","date_gmt":"2024-06-12T13:00:31","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=21113"},"modified":"2024-06-12T14:53:44","modified_gmt":"2024-06-12T18:53:44","slug":"emilys-entourage-co-founder-awarded-2024-leadership-in-personalized-medicine-award-by-the-personalized-medicine-coalition","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/emilys-entourage-co-founder-awarded-2024-leadership-in-personalized-medicine-award-by-the-personalized-medicine-coalition\/","title":{"rendered":"Emily's Entourage Kurucu Orta\u011f\u0131 Ki\u015fiselle\u015ftirilmi\u015f T\u0131p Koalisyonu Taraf\u0131ndan 2024 Ki\u015fiselle\u015ftirilmi\u015f T\u0131pta Liderlik \u00d6d\u00fcl\u00fcne Lay\u0131k G\u00f6r\u00fcld\u00fc"},"content":{"rendered":"

Emily Kramer-Golinkoff, kistik fibrozis hastas\u0131 bir birey ve Emily'nin \u00c7evresi<\/a>Ki\u015fiselle\u015ftirilmi\u015f T\u0131p Koalisyonu taraf\u0131ndan verilen Ki\u015fiselle\u015ftirilmi\u015f T\u0131pta Liderlik \u00d6d\u00fcl\u00fc'n\u00fcn bu y\u0131lki sahibi oldu.
\n<\/em><\/p>\n

\"\"

Emily Kramer-Golinkoff, Emily's Entourage'\u0131n kurucu orta\u011f\u0131 ve 2024 Ki\u015fiselle\u015ftirilmi\u015f T\u0131pta Liderlik \u00d6d\u00fcl\u00fc sahibi<\/p><\/div>\n

Lower Merion, PA - 12 Haziran 2024<\/b> - Emily Kramer-Golinkoff, kurucu orta\u011f\u0131 Emily'nin \u00c7evresi<\/a> (EE), yeni tedaviler i\u00e7in ara\u015ft\u0131rmalar\u0131 h\u0131zland\u0131ran ve mevcut CFTR mod\u00fclat\u00f6rlerinden yararlanamayan kistik fibrozlu (KF) ki\u015filerin son 10%'si i\u00e7in bir tedavi sa\u011flayan yenilik\u00e7i bir 501(c)3, bug\u00fcn Ki\u015fiselle\u015ftirilmi\u015f T\u0131pta Liderlik i\u00e7in 2024 \u00d6d\u00fcl\u00fc'n\u00fcn sahibi olarak ilan edildi. Ki\u015fiselle\u015ftirilmi\u015f T\u0131p Koalisyonu<\/a> (PMC).<\/p>\n

Bebekken KF te\u015fhisi konulan Kramer-Golinkoff, akci\u011ferlerde, sindirim sisteminde ve di\u011fer organlarda ciddi hasara neden olan bu ilerleyici ve \u00f6l\u00fcmc\u00fcl genetik hastal\u0131\u011fa kar\u015f\u0131 amans\u0131z bir sava\u015f veriyor. Mevcut ila\u00e7lar KF'li bireylerin y\u00fczde 90'\u0131nda CFTR proteininin i\u015fleyi\u015fini iyile\u015ftirebilirken, Kramer-Golinkoff ve bu hastal\u0131\u011f\u0131n en nadir formlar\u0131na sahip binlerce ki\u015fi her g\u00fcn b\u00fcy\u00fck zorluklarla kar\u015f\u0131la\u015fmaya devam ediyor.<\/p>\n

Kramer-Golinkoff, solunum tedavileri, kistik fibrozisle ili\u015fkili diyabet i\u00e7in enjeksiyonlar ve g\u00fcnde 30 hap almay\u0131 i\u00e7eren s\u0131k\u0131 bir rejime ra\u011fmen, kendisi gibi mevcut hastal\u0131k mod\u00fcle edici tedavilerin hi\u00e7birinden fayda g\u00f6rmeyen KF'li insanlar i\u00e7in yeni geleceklere \u00f6nc\u00fcl\u00fck etmede itici bir g\u00fc\u00e7 olmu\u015ftur.<\/p>\n

Pennsylvania \u00dcniversitesi'nden ileti\u015fim ve biyoetik alanlar\u0131nda lisans ve y\u00fcksek lisans derecelerini ald\u0131ktan sonra Kramer-Golinkoff, KF toplulu\u011fu i\u00e7in y\u00fcksek etkili at\u0131l\u0131mlar\u0131 h\u0131zl\u0131 bir \u015fekilde takip etmek i\u00e7in 2011 y\u0131l\u0131nda Emily's Entourage'\u0131 kurdu. O zamandan bu yana EE, KF'li bireylerin son y\u00fczde 10'u i\u00e7in hayat kurtaran tedaviler ve k\u00fcrler bulmay\u0131 ama\u00e7layan ara\u015ft\u0131rma ve ila\u00e7 geli\u015ftirme programlar\u0131 i\u00e7in $9.8 milyondan fazla fon sa\u011flad\u0131. Ayr\u0131ca, EE $52.3 milyon devam finansman\u0131 sa\u011flam\u0131\u015f, \u015fimdi sat\u0131n al\u0131nan bir gen terapisi \u015firketini kurmu\u015f ve i\u015fe al\u0131mlar\u0131 h\u0131zland\u0131rmak ve hedeflenen tedavilere eri\u015fimi art\u0131rmak i\u00e7in do\u011frudan hastaya klinik deneme e\u015fle\u015ftirme program\u0131 geli\u015ftirmi\u015ftir.<\/p>\n

Kramer-Golinkoff, \"Ki\u015fiselle\u015ftirilmi\u015f t\u0131p benim umudum ve benim gibi nadir bir hastal\u0131\u011f\u0131, nadir bir mutasyonu ya da sadece daha \u00f6zelle\u015ftirilmi\u015f bir tedavi gerektiren t\u0131bbi bir durumu olan herkesin umudu\" diyor.<\/p>\n

\u00d6d\u00fcl, 13 Kas\u0131m 2024 tarihinde Boston, Massachusetts'te d\u00fczenlenecek olan 18. Y\u0131ll\u0131k Ki\u015fiselle\u015ftirilmi\u015f T\u0131p Konferans\u0131 s\u0131ras\u0131nda takdim edilecektir. \u00d6d\u00fcl ve etkinlik hakk\u0131nda daha fazla bilgi i\u00e7in PMC'nin Konferans web sitesine buradan ula\u015fabilirsiniz.<\/a><\/p>\n

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

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 kay\u0131t defteri ve klinik deney e\u015fle\u015ftirme program\u0131 geli\u015ftirmi\u015f ve y\u00fcksek etkili ara\u015ft\u0131rma ve ila\u00e7 geli\u015ftirmeye y\u00f6nelik d\u00fcnya \u00e7ap\u0131nda \u00e7abalara \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 emilysentourage.org<\/a>.<\/p>\n

 <\/p>\n

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

Hannah Kleckner<\/p>\n

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

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

Kistik fibrozis hastas\u0131 ve Emily's Entourage'\u0131n kurucular\u0131ndan Emily Kramer-Golinkoff, Ki\u015fiselle\u015ftirilmi\u015f T\u0131p Koalisyonu taraf\u0131ndan verilen Ki\u015fiselle\u015ftirilmi\u015f T\u0131pta Liderlik \u00d6d\u00fcl\u00fc'n\u00fcn bu y\u0131lki sahibi oldu. Lower Merion, PA - 12 Haziran 2024 - Emily Kramer-Golinkoff, yeni tedaviler i\u00e7in ara\u015ft\u0131rmalar\u0131 h\u0131zland\u0131ran yenilik\u00e7i bir 501(c)3 olan Emily's Entourage'\u0131n (EE) kurucu orta\u011f\u0131... <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1719,"featured_media":21128,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"none","_seopress_titles_title":"%%post_title%%","_seopress_titles_desc":"","_seopress_robots_index":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[178],"tags":[52,7,12,78,111],"class_list":["post-21113","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-press-releases","tag-cf-awareness","tag-cystic-fibrosis","tag-emilys-entourage","tag-nonsense-mutations","tag-research"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EKG-WP-Featured-Image.png","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/21113","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=21113"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/21113\/revisions"}],"predecessor-version":[{"id":21129,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/21113\/revisions\/21129"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/21128"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=21113"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=21113"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=21113"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}