{"id":13046,"date":"2019-05-29T08:31:50","date_gmt":"2019-05-29T12:31:50","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=13046"},"modified":"2019-06-10T09:49:38","modified_gmt":"2019-06-10T13:49:38","slug":"emily-speaks-at-translate-bios-cf-awareness-month-event","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/de\/emily-speaks-at-translate-bios-cf-awareness-month-event\/","title":{"rendered":"Emily spricht bei der Veranstaltung von Translate Bio zum Monat der Mukoviszidose"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">Am 29. Mai nahm Emily's Entourage (EE) an der Veranstaltung von Translate Bio zum Monat der Mukoviszidose (CF) in Boston teil. Die Mitbegr\u00fcnderin von EE, Emily Kramer-Golinkoff, er\u00f6ffnete die Veranstaltung und nahm an einer Podiumsdiskussion mit Fragen und Antworten teil. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">An der Podiumsdiskussion nahmen neben Emily wichtige Mitglieder der Mukoviszidose-Gemeinschaft, Bob Coughlin, CEO von MassBio, Dr. Jonathan Zuckerman, ein an der laufenden klinischen Studie von Translate Bio beteiligter Arzt, und Dr. Ann Barbier, CMO von Translate Bio, teil. Moderiert wurde die Diskussionsrunde von Dr. Meagan Vaughn, Senior Clinical Research Scientist bei Rho, und <\/span><span style=\"font-weight: 400;\">befasste sich mit dem dringenden Bedarf an neuen Behandlungsm\u00f6glichkeiten f\u00fcr Mukoviszidose und damit, dass \"irgendwann nicht gut genug ist f\u00fcr die endg\u00fcltige 10%\".\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Die Sitzung wurde per Livestream \u00fcbertragen und kann unten angesehen werden<\/span><span style=\"font-weight: 400;\">. Die Mitglieder der Mukoviszidose-Gemeinschaft wurden ermutigt, sich einzuschalten und ihre Fragen einzusenden.<\/span><\/p>\n<p><iframe src=\"https:\/\/player.vimeo.com\/video\/340013706\" width=\"900\" height=\"500\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><span data-mce-type=\"bookmark\" style=\"display: inline-block; width: 0px; overflow: hidden; line-height: 0;\" class=\"mce_SELRES_start\"><\/span><span data-mce-type=\"bookmark\" style=\"display: inline-block; width: 0px; overflow: hidden; line-height: 0;\" class=\"mce_SELRES_start\"><\/span><\/iframe><\/p>\n<p><span style=\"font-weight: 400;\">W\u00e4hrend ihrer Ausf\u00fchrungen sprach Emily \u00fcber ihren eigenen Weg mit der Nonsense-Mutation der Mukoviszidose und erl\u00e4uterte das Ziel von EE, lebensrettende Behandlungen und die Entwicklung von Medikamenten f\u00fcr die verbleibenden 10% zu entwickeln.<\/span><\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\"size-full wp-image-13128 aligncenter\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/TranslateBIO_2.jpg\" alt=\"\" width=\"900\" height=\"563\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/TranslateBIO_2.jpg 900w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/TranslateBIO_2-300x188.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/TranslateBIO_2-768x480.jpg 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/TranslateBIO_2-600x375.jpg 600w\" sizes=\"(max-width: 900px) 100vw, 900px\" \/><\/p>\n<p><span style=\"font-weight: 400;\">Im Anschluss an ihre Ausf\u00fchrungen nahm Emily an einer Podiumsdiskussion teil, in der Themen wie der aktuelle Stand der Innovation in der Mukoviszidose-Behandlung, die potenzielle Rolle neuer Therapien in der Zukunft und die Last, die 10% der Mukoviszidose-Gemeinschaft noch immer tr\u00e4gt, behandelt wurden.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Translate Bio ist ein Unternehmen f\u00fcr mRNA-Therapeutika, das derzeit Medikamente zur Behandlung von Krankheiten entwickelt, die durch Protein- oder Gendysfunktionen verursacht werden, wie z. B. Mukoviszidose. W\u00e4hrend f\u00fcr etwa 90% der Mukoviszidose-Patienten ein bahnbrechender Durchbruch unmittelbar bevorsteht, stellen Menschen mit Nonsense-Mutationen die Mehrheit der \u00fcbrigen 10% dar, die nicht von diesen Durchbr\u00fcchen profitieren werden.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Emily's Entourage f\u00fchlt sich unglaublich geehrt, an der Seite einer solchen Reihe von Schl\u00fcsselpersonen der Mukoviszidose-Gemeinschaft teilgenommen zu haben, um das Bewusstsein f\u00fcr die wichtige Arbeit zu sch\u00e4rfen, die noch f\u00fcr die endg\u00fcltigen 10% der Mukoviszidose-Gemeinschaft geleistet werden muss. Ein gro\u00dfes Dankesch\u00f6n an Translate Bio f\u00fcr die Organisation einer so wunderbaren Veranstaltung und daf\u00fcr, dass EE und Emily daran teilgenommen haben!<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>On May 29, Emily\u2019s Entourage (EE) attended Translate Bio\u2019s Cystic Fibrosis (CF) Awareness Month event in Boston. EE Co-Founder, Emily Kramer-Golinkoff, provided opening remarks to launch the day\u2019s events as well as took part in a Q&amp;A panel discussion. On the panel, Emily was joined by key CF community members, Bob Coughlin, CEO of MassBio,&#8230; <\/p>\n<div class=\"clear\"><\/div>\n<p><a href=\"https:\/\/www.emilysentourage.org\/de\/emily-speaks-at-translate-bios-cf-awareness-month-event\/\" class=\"excerpt-read-more\">Mehr lesen<\/a><\/p>","protected":false},"author":1704,"featured_media":13127,"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":[{"seopress_local_business_opening_hours":[{"am":{"start":{"hours":"00","mins":"00"},"end":{"hours":"00","mins":"00"}},"pm":{"start":{"hours":"00","mins":"00"},"end":{"hours":"00","mins":"00"}}},{"am":{"start":{"hours":"00","mins":"00"},"end":{"hours":"00","mins":"00"}},"pm":{"start":{"hours":"00","mins":"00"},"end":{"hours":"00","mins":"00"}}},{"am":{"start":{"hours":"00","mins":"00"},"end":{"hours":"00","mins":"00"}},"pm":{"start":{"hours":"00","mins":"00"},"end":{"hours":"00","mins":"00"}}},{"am":{"start":{"hours":"00","mins":"00"},"end":{"hours":"00","mins":"00"}},"pm":{"start":{"hours":"00","mins":"00"},"end":{"hours":"00","mins":"00"}}},{"am":{"start":{"hours":"00","mins":"00"},"end":{"hours":"00","mins":"00"}},"pm":{"start":{"hours":"00","mins":"00"},"end":{"hours":"00","mins":"00"}}},{"am":{"start":{"hours":"00","mins":"00"},"end":{"hours":"00","mins":"00"}},"pm":{"start":{"hours":"00","mins":"00"},"end":{"hours":"00","mins":"00"}}},{"am":{"start":{"hours":"00","mins":"00"},"end":{"hours":"00","mins":"00"}},"pm":{"start":{"hours":"00","mins":"00"},"end":{"hours":"00","mins":"00"}}}]},[{"question":"","answer":""}]],"_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":[1],"tags":[87,77,7,78,79,86],"class_list":["post-13046","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-boston","tag-cf-awareness-month","tag-cystic-fibrosis","tag-nonsense-mutations","tag-rare-disease","tag-translate-bio"],"acf":[],"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/TranslateBIO_1.jpg","post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/de\/wp-json\/wp\/v2\/posts\/13046","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/de\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/de\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/de\/wp-json\/wp\/v2\/users\/1704"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/de\/wp-json\/wp\/v2\/comments?post=13046"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/de\/wp-json\/wp\/v2\/posts\/13046\/revisions"}],"predecessor-version":[{"id":13130,"href":"https:\/\/www.emilysentourage.org\/de\/wp-json\/wp\/v2\/posts\/13046\/revisions\/13130"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/de\/wp-json\/wp\/v2\/media\/13127"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/de\/wp-json\/wp\/v2\/media?parent=13046"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/de\/wp-json\/wp\/v2\/categories?post=13046"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/de\/wp-json\/wp\/v2\/tags?post=13046"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}