{"id":13333,"date":"2019-08-23T12:46:17","date_gmt":"2019-08-23T16:46:17","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=13333"},"modified":"2019-08-26T17:22:24","modified_gmt":"2019-08-26T21:22:24","slug":"training-for-a-cure-cf-researcher-raises-funds-for-ee","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/training-for-a-cure-cf-researcher-raises-funds-for-ee\/","title":{"rendered":"Tedavi i\u00e7in E\u011fitim: KF Ara\u015ft\u0131rmac\u0131s\u0131 EE i\u00e7in Fon Topluyor"},"content":{"rendered":"

Emily's Entourage (EE), Kistik Fibrozis'in (KF) anlams\u0131z mutasyonlar\u0131 i\u00e7in ara\u015ft\u0131rma ve ila\u00e7 geli\u015ftirmeyi h\u0131zland\u0131rmaya adanm\u0131\u015f bir grup bilim insan\u0131na sahip olmaktan inan\u0131lmaz derecede onur duymaktad\u0131r. \u00d6n\u00fcm\u00fczdeki y\u0131l, KF pop\u00fclasyonunun 90%'si piyasada hayat kurtaran bir ilac\u0131n faydalar\u0131n\u0131 g\u00f6rebilir (\u015fu anda FDA incelemesi ve onay\u0131 bekleniyor), ancak sa\u00e7ma mutasyonlar\u0131 olanlar da dahil olmak \u00fczere son 10%'de bulunanlar bu yeni \u00e7\u0131\u011f\u0131r a\u00e7an ila\u00e7lardan yararlanamayacak.\u00a0<\/span><\/p>\n

Ve asl\u0131nda, bilim insanlar\u0131n\u0131n ba\u011fl\u0131l\u0131\u011f\u0131 o kadar derindir ki, sadece laboratuvardaki kritik ara\u015ft\u0131rmalar\u0131 ilerleten \"g\u00fcnl\u00fck i\u015fleri\" ile s\u0131n\u0131rl\u0131 de\u011fildir. Aksine, zaman zaman hayatlar\u0131n\u0131n pek \u00e7ok y\u00f6n\u00fcne n\u00fcfuz ediyor. Buna Rochester \u00dcniversitesi'nden John Lueck'ten daha iyi bir \u00f6rnek yoktur. <\/span>yap<\/span><\/i> at\u0131l\u0131mlar\u0131 h\u0131zland\u0131rmak ve son 10% i\u00e7in bir tedavi bulmak i\u00e7in ara\u015ft\u0131rma, ayn\u0131 zamanda <\/span>fon toplamak<\/span><\/i> kritik ara\u015ft\u0131rmay\u0131 y\u00f6nlendirecek.<\/span><\/p>\n

Dr. Lueck son birka\u00e7 ayd\u0131r, 22 A\u011fustos'ta \u0130svi\u00e7re Alpleri'nde yakla\u015f\u0131k 15.000 fit y\u00fcksekli\u011fe ula\u015fan Matterhorn da\u011f\u0131na t\u0131rmanmak i\u00e7in e\u011fitim ald\u0131. \u0130ki kez EE bursiyeri olarak <\/span>Catalyst for a Cure Kampanyas\u0131<\/span><\/i><\/a>Senaryoyu tersine \u00e7evirdi ve t\u00fcm e\u011fitim s\u00fcreci boyunca EE i\u00e7in fon toplamay\u0131 taahh\u00fct etti!<\/span><\/p>\n

\"\"<\/p>\n

2017 y\u0131l\u0131nda Iowa \u00dcniversitesi'ndeyken Dr. Lueck, KF'nin anlams\u0131z mutasyonlar\u0131n\u0131 d\u00fczeltmek i\u00e7in transfer-RNA molek\u00fcllerinin m\u00fchendisli\u011fi \u00fczerine ara\u015ft\u0131rmalar\u0131n\u0131 ilerletmek i\u00e7in EE hibesi alan Chris Ahern, PhD liderli\u011findeki ekibin bir \u00fcyesiydi. EE'nin ilk finansman\u0131yla elde edilen sonu\u00e7lara dayanarak, Dr. Lueck <\/span>KF'nin nonsense mutasyonlar\u0131 \u00fczerine ara\u015ft\u0131rmalar\u0131n\u0131 ilerletmek i\u00e7in \u00fc\u00e7 y\u0131l boyunca $750.000 Vertex KF Ara\u015ft\u0131rma \u0130novasyon \u00d6d\u00fcl\u00fc ald\u0131. O <\/span>EE'nin \u00fc\u00e7\u00fcnc\u00fc bilimsel sempozyumuna kat\u0131ld\u0131, <\/span>Sa\u00e7ma Mutasyonlar i\u00e7in Terap\u00f6tik Geli\u015ftirme: KF i\u00e7in Son S\u0131n\u0131r<\/a>,<\/span><\/i> Eyl\u00fcl 2018'de ve son olarak, ACE-tRNA'lar\u0131 bask\u0131layan KF sa\u00e7ma mutasyonunun etkinli\u011fini \u00f6l\u00e7mek i\u00e7in \u00f6zel ekipman olan Ussing odalar\u0131n\u0131 sat\u0131n almak i\u00e7in bir EE te\u015fvik hibesi ald\u0131. <\/span><\/p>\n

\"\"<\/p>\n

Yak\u0131n zamanda Dr. Lueck, \u015fimdiye kadarki en b\u00fcy\u00fck maceralar\u0131ndan birini denemek i\u00e7in \u00e7ocuklu\u011fundaki a\u00e7\u0131k hava sevgisine ve da\u011fc\u0131l\u0131k becerilerine d\u00f6nd\u00fc. Sadece 50 eyaletin tamam\u0131n\u0131 gezmekle kalmad\u0131, ayn\u0131 zamanda d\u00fcnyay\u0131 da dola\u015ft\u0131 ve Meksika, Ekvador ve \u015fimdi de \u0130svi\u00e7re'de 14.000 fitin \u00fczerindeki zirvelere t\u0131rmand\u0131!\u00a0<\/span><\/p>\n

\n

Yapt\u0131klar\u0131n\u0131zdan ders \u00e7\u0131kar\u0131r ve ilerlemeye devam edersiniz. Bende kat\u0131r geni var, bu da devam etmemi sa\u011fl\u0131yor.\u00a0<\/strong><\/p>\n<\/blockquote>\n

Da\u011fc\u0131l\u0131\u011fa olan d\u00fc\u015fk\u00fcnl\u00fc\u011f\u00fcne neyin katk\u0131da bulundu\u011fu soruldu\u011funda, Dr. Lueck konuyu bir ara\u015ft\u0131rmac\u0131 olarak kendisini harekete ge\u00e7iren \u015feye getirdi: \"Yapt\u0131klar\u0131n\u0131zdan ders \u00e7\u0131kar\u0131yor ve ilerlemeye devam ediyorsunuz.\" Engelleri a\u015fmak zorunda kalmak onun zafer azmini durdurmuyor. \"Bende kat\u0131r geni var,\" diye \u015faka yapt\u0131, \"bu da devam etmemi sa\u011fl\u0131yor.\" <\/span><\/p>\n

\"\"<\/p>\n

Dr. Lueck, KF alan\u0131nda ba\u011f\u0131ms\u0131z bir ara\u015ft\u0131rmac\u0131 olmas\u0131nda EE'nin oynad\u0131\u011f\u0131 \u00f6nemli rol\u00fc kabul ediyor. Her e\u011fitim seans\u0131 ve toplanan her dolarla, KF bilim insan\u0131n\u0131n yolculu\u011funu Matterhorn'un zirvesine yap\u0131lan yolculukla birle\u015ftirdi. Tehlikeli hava ko\u015fullar\u0131 nedeniyle en y\u00fcksek zirveye ula\u015famam\u0131\u015f olsa da (dikkati ve g\u00fcvenli\u011fi i\u00e7in minnettar\u0131z!), tek ba\u015f\u0131na yapt\u0131\u011f\u0131 ke\u015fif gezisi hayat kurtaran at\u0131l\u0131mlar i\u00e7in daha kritik fonlara $2,780 katk\u0131da bulundu! Dr. Lueck, KF'de h\u0131zl\u0131 at\u0131l\u0131mlar i\u00e7in nihai aray\u0131\u015ftaki rol\u00fcn\u00fcn fark\u0131ndad\u0131r ve KF toplulu\u011funun son 10%'si i\u00e7in de at\u0131l\u0131mlar ve bir tedavi bulman\u0131n bir par\u00e7as\u0131 olabilece\u011fini derinden ummaktad\u0131r.\u00a0<\/span><\/p>\n

Emily's Entourage, Dr. Lueck'e KF'nin sa\u00e7ma mutasyonlar\u0131 i\u00e7in birden fazla \u015fekilde at\u0131l\u0131mlar\u0131 h\u0131zland\u0131rmaya olan tutkulu ba\u011fl\u0131l\u0131\u011f\u0131 i\u00e7in minnettar. <\/span><\/p>","protected":false},"excerpt":{"rendered":"

Emily's Entourage (EE), Kistik Fibrozis'in (KF) sa\u00e7ma mutasyonlar\u0131 i\u00e7in ara\u015ft\u0131rma ve ila\u00e7 geli\u015ftirmeyi h\u0131zland\u0131rmaya adanm\u0131\u015f bir grup bilim insan\u0131na sahip olmaktan b\u00fcy\u00fck onur duymaktad\u0131r. \u00d6n\u00fcm\u00fczdeki y\u0131l, KF pop\u00fclasyonunun 90%'si piyasada hayat kurtaran bir ilac\u0131n faydalar\u0131n\u0131 g\u00f6rebilir (\u015fu anda FDA incelemesi ve onay\u0131 bekleniyor), ancak... <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1704,"featured_media":13376,"comment_status":"open","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":"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":"","_seopress_redirections_param":"","_seopress_redirections_type":301,"_seopress_analysis_target_kw":"","_seopress_news_disabled":"","_seopress_video_disabled":"","_seopress_video":[{"url":"","title":"","desc":"","thumbnail":"","duration":"","rating":"","view_count":"","tag":"","cat":""}],"_seopress_pro_schemas_manual":null,"_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":[117,114,7,109,118,112,116,78,111,113,119,115,110],"class_list":["post-13333","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-climbing","tag-cure","tag-cystic-fibrosis","tag-john-lueck","tag-matterhorn","tag-medical","tag-mountain","tag-nonsense-mutations","tag-research","tag-scientist","tag-swiss-alps","tag-training","tag-univeristy-of-rochester"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/JohnLueck_EE_web.jpg","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/13333","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\/1704"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=13333"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/13333\/revisions"}],"predecessor-version":[{"id":13378,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/13333\/revisions\/13378"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/13376"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=13333"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=13333"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=13333"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}