{"id":2853,"date":"2015-07-13T18:19:36","date_gmt":"2015-07-14T01:19:36","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=2853"},"modified":"2023-12-20T04:37:46","modified_gmt":"2023-12-20T09:37:46","slug":"where-in-the-world-is-emily-white-house-edition","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/sv\/where-in-the-world-is-emily-white-house-edition\/","title":{"rendered":"Emily utn\u00e4mnd till \"Champion of Change\" i Vita huset"},"content":{"rendered":"

Emily tillbringade f\u00f6rra onsdagen i Vita huset som en av nio personer utn\u00e4mnda till Champion of Change<\/a> f\u00f6r president Obamas Initiativ f\u00f6r precisionsmedicin<\/a>.<\/p>\n

\"The<\/a>

De 9 ledarna f\u00f6r f\u00f6r\u00e4ndring inom precisionsmedicin<\/p><\/div>\n

\"Det h\u00e4r erk\u00e4nnandet fr\u00e5n Vita huset visar att Emily's Entourage g\u00e5r i br\u00e4schen - vi t\u00e4njer p\u00e5 vetenskapens gr\u00e4nser och hj\u00e4lper till att skriva historien om precisionsmedicin\", s\u00e4ger Emily. \"Precisionsmedicin \u00e4r inte bara ett dj\u00e4rvt politiskt initiativ eller en sp\u00e4nnande ny era inom biomedicinsk forskning och individanpassade behandlingar - det \u00e4r mitt hopp om en framtid.\"<\/p>\n

\"Emily<\/a>\"V\u00e5rt m\u00e5l \u00e4r att hitta behandlingar som \u00e4r utformade \u00e4ven f\u00f6r dem av oss som har s\u00e4llsynta mutationer, s\u00e5 att ingen har en mutation som \u00e4r f\u00f6r ovanlig f\u00f6r att hamna p\u00e5 forskningens radar. Det h\u00e4r \u00e4r kampen f\u00f6r att r\u00e4dda mitt liv och livet p\u00e5 andra m\u00e4nniskor med s\u00e4llsynta mutationer som min\", s\u00e4ger Emily och beskriver varf\u00f6r Emily's Entourage (EE)<\/a> har samlat in $1,5 miljoner sedan 2011 f\u00f6r att finansiera forskning om nonsensmutationer i CF.<\/p>\n

Godk\u00e4nnandet av genombrottsl\u00e4kemedlet Kalydeco 2012 blev en v\u00e4ckarklocka f\u00f6r Emily och hennes Entourage. Kalydeco \u00e4r det f\u00f6rsta l\u00e4kemedlet som behandlar grundorsaken till CF och har f\u00f6r\u00e4ndrat spelplanen f\u00f6r 4 procent av CF-populationen som delar en gemensam mutation. Emily har sett sina v\u00e4nner l\u00e4mna v\u00e4ntelistan f\u00f6r lungtransplantation, bilda familj, springa maraton och b\u00f6rja planera en framtid som de aldrig trodde att de skulle ha - allt tack vare Kalydeco. Tyv\u00e4rr hj\u00e4lper det inte Emilys s\u00e4llsynta CF-mutation.<\/p>\n

Ett annat CF-genombrott intr\u00e4ffade den 2 juli d\u00e5 FDA godk\u00e4nde en kombinationsbehandling<\/a> som kommer att hj\u00e4lpa cirka 50 procent av CF-populationen - men \u00e5terigen, inte Emily. \"Det \u00e4r fantastiskt att se mina v\u00e4nner f\u00e5 de h\u00e4r genombrotten. Men vi vill ha ett s\u00e5dant genombrott f\u00f6r mig och alla andra med CF ocks\u00e5\", s\u00e4ger hon.<\/p>\n

\"Francis<\/a>

NIH-chefen Francis Collins st\u00f6der Emily's Entourage<\/p><\/div>\n

Emily var en av de nio \"Champions of Change\" i Vita huset som presenterades av NIH:s chef Francis Collins, MD, PhD, som sa: \"V\u00e5rt m\u00e5l \u00e4r att f\u00f6r\u00e4ndra hur medicin ut\u00f6vas genom att ta h\u00e4nsyn till individuella skillnader.\"<\/p>\n

Presidentens Precision Medicine Initiative syftar till att bygga upp en kohort p\u00e5 en miljon individer f\u00f6re \u00e5rets slut f\u00f6r att p\u00e5skynda uppt\u00e4cktstakten f\u00f6r medicinsk forskning och behandlingar som \u00e4r exakt inriktade p\u00e5 individer - inklusive m\u00e4nniskor som Emily med s\u00e4llsynta, avancerade och livshotande sjukdomar som befinner sig i en kamp mot tiden.<\/p>\n

Denna \u00e4ra och m\u00f6jligheten att f\u00e5 tala i Vita huset \u00e4r \u00f6gonblick som Emily kommer att minnas f\u00f6r alltid. Hennes ber\u00e4ttelse v\u00e4cker genklang p\u00e5 politisk och personlig niv\u00e5, vilket \u00e5terspeglas i den omfattande mediebevakningen av hennes \u00e4ra p\u00e5 CBS3<\/a>, NBC10<\/a>, CBS3 Lokal<\/a>, Fox29, och i Philadelphia Inquirer<\/a>, den Judisk exponent<\/a>, den Philly Voice<\/a>, och mer<\/a>.<\/p>\n

L\u00e4s ett blogginl\u00e4gg som Emily skrev f\u00f6r Vita husets webbplats<\/a>
\nSe en video av evenemanget Champions of Change<\/a> (Emilys panel b\u00f6rjar vid 0:26)<\/p>\n

\"Emily<\/a>

Emily intervjuas av NBC10:s Keith Jones<\/p><\/div>\n

\"\"<\/a>

Emily intervjuas av CBS Stephanie Stahl<\/p><\/div>","protected":false},"excerpt":{"rendered":"

Emily spent last Wednesday at the White House as one of nine individuals honored as a Champion of Change for President Obama\u2019s Precision Medicine Initiative. \u201cThis recognition from the White House shows that Emily\u2019s Entourage is leading the way\u2014pushing the boundaries of science and helping to write the story of precision medicine,\u201d said Emily. \u201cPrecision… <\/p>\n

<\/div>\n

L\u00e4s mer om<\/a><\/p>","protected":false},"author":59,"featured_media":2939,"comment_status":"open","ping_status":"open","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":0,"_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":[1,6],"tags":[],"class_list":["post-2853","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","category-emilys-entourage-blog"],"acf":[],"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Emily-at-White-House-Smaller.jpg","post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/posts\/2853","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/users\/59"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/comments?post=2853"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/posts\/2853\/revisions"}],"predecessor-version":[{"id":20446,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/posts\/2853\/revisions\/20446"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/media\/2939"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/media?parent=2853"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/categories?post=2853"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/tags?post=2853"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}