{"id":2457,"date":"2015-04-29T17:37:20","date_gmt":"2015-04-30T00:37:20","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=2457"},"modified":"2023-12-20T02:46:32","modified_gmt":"2023-12-20T07:46:32","slug":"make-some-noise-may-is-cystic-fibrosis-awareness-month","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/sv\/make-some-noise-may-is-cystic-fibrosis-awareness-month\/","title":{"rendered":"G\u00f6r lite v\u00e4sen av dig: Maj \u00e4r m\u00e5naden f\u00f6r medvetenhet om cystisk fibros!"},"content":{"rendered":"<p>Emily's Entourage har m\u00e5nga saker planerade f\u00f6r att hj\u00e4lpa till att erk\u00e4nna och fira maj m\u00e5nad som National Cystic Fibrosis Awareness Month! Oavsett om du \u00e4r en lojal EE-medlem eller ny i detta fantastiska team, v\u00e4nligen ta en snabb stund f\u00f6r att l\u00e4ra dig om skillnaden du kan g\u00f6ra f\u00f6r att hj\u00e4lpa till att r\u00e4dda v\u00e5r otroliga Emily och alla med cystisk fibros:<\/p>\n<p><strong>- SPRID ORDET<\/strong><br \/>\nUnder hela m\u00e5naden kommer vi att vara som galna p\u00e5 Facebook, Instagram och Twitter - vi kommer att g\u00f6ra sp\u00e4nnande tillk\u00e4nnagivanden, ge dig en inblick i livet med CF och visa hur ostoppbar denna Entourage \u00e4r ... tillsammans.<br \/>\nF\u00f6lj med oss p\u00e5 <a href=\"https:\/\/www.facebook.com\/EmilysEntourage?utm_source=The+EE+Insider&amp;utm_campaign=d4d1b5026d-CF+Awareness+Month_May2015&amp;utm_medium=email&amp;utm_term=0_68d2179a03-d4d1b5026d-\" target=\"_blank\" rel=\"noopener noreferrer\">Facebook<\/a>, Instagram och <a href=\"https:\/\/twitter.com\/emsentourage4cf?utm_source=The+EE+Insider&amp;utm_campaign=d4d1b5026d-CF+Awareness+Month_May2015&amp;utm_medium=email&amp;utm_term=0_68d2179a03-d4d1b5026d-\" target=\"_blank\" rel=\"noopener noreferrer\">Twitter<\/a> att vara en del av den h\u00e4r virvelvindr\u00f6relsen. Genom att gilla och dela inl\u00e4ggen p\u00e5 sociala medier och sprida ordet till dina v\u00e4nner och din familj h\u00f6jer du CF-profilen, f\u00f6rst\u00e4rker effekten av Emilys Entourage och tar oss s\u00e5 mycket n\u00e4rmare ett botemedel. Allt b\u00f6rjar med ett snabbt klick.<\/p>\n<p><strong>- \u00c4NDRA DITT FACEBOOKFOTO<\/strong><br \/>\nVisa att du st\u00e5r bakom EE i v\u00e5rt m\u00e5l att hitta ett botemedel mot CF genom att \u00e4ndra din Facebook-profil eller ditt omslagsfoto under maj m\u00e5nad. G\u00e5 helt enkelt till <a href=\"https:\/\/www.facebook.com\/EmilysEntourage?utm_source=The+EE+Insider&amp;utm_campaign=d4d1b5026d-CF+Awareness+Month_May2015&amp;utm_medium=email&amp;utm_term=0_68d2179a03-d4d1b5026d-\" target=\"_blank\" rel=\"noopener noreferrer\">EE:s Facebook-sida<\/a>Ladda ner profil- eller omslagsfotot f\u00f6r maj m\u00e5nads CF-medvetenhet och ladda sedan upp det till ditt konto. L\u00e5t oss visa FB-gemenskapen hur stor och m\u00e4ktig v\u00e5r Entourage \u00e4r!<\/p>\n<p><strong>- DONERA<\/strong><br \/>\nMedvetenhet \u00e4r fokus f\u00f6r denna m\u00e5nad (det st\u00e5r ju i titeln), men i sj\u00e4lva verket \u00e4r det finansiering som \u00f6kar takten i CF-forskningen och chansen att r\u00e4dda liv. <a href=\"https:\/\/www.emilysentourage.org\/sv\/donate\/\" target=\"_blank\" rel=\"noopener noreferrer\">G\u00f6r en donation p\u00e5 EE:s webbplats<\/a> - och dela g\u00e4rna budskapet med ditt n\u00e4tverk - f\u00f6r att fr\u00e4mja v\u00e5r str\u00e4van efter nya behandlingar och ett botemedel.<\/p>\n<p>CF Awareness Month \u00e4r ocks\u00e5 fullsp\u00e4ckad med s\u00e4tt att engagera sig i EE. Kolla in dessa lokala evenemang och s\u00e4tt att st\u00f6tta om du befinner dig i Philadelphia-omr\u00e5det:<\/p>\n<p><strong>Mother Warriors and Friends:<\/strong> <strong>Mindful Yoga<\/strong> S\u00f6ndag 3 maj kl. 10.00 - 12.00<br \/>\nEn morgon med medveten yoga, gemenskap och f\u00f6rfriskningar - allt till st\u00f6d f\u00f6r Emily's Entourage. De b\u00e4sta lokala instrukt\u00f6rerna kommer att leda en timmes yogaklass f\u00f6r alla niv\u00e5er med livemusik av Stephen Groff och f\u00f6rfriskningar som Firinji bjuder p\u00e5.<\/p>\n<p>Plats: Ardmore Toyota, 219 E Lancaster Ave, Ardmore PA<br \/>\n<em>Obs: Ingen registrering kr\u00e4vs; $25 f\u00f6reslagen donation.<\/em><\/p>\n<p><strong>Penn Orphan Disease Center's Million Dollar Bike Ride<\/strong> L\u00f6rdag 9 maj kl. 8.00<br \/>\nEn 12-, 35- eller 75-mil l\u00e5ng cykeltur f\u00f6r att st\u00f6dja forskning om s\u00e4llsynta sjukdomar. Alla pengar doneras till team EE <span style=\"text-decoration: underline;\"><strong>kommer att matchas upp till $50K<\/strong><\/span> f\u00f6r forskning om s\u00e4llsynta nonsensmutationer vid cystisk fibros. L\u00e4s mer p\u00e5 <a href=\"https:\/\/www.milliondollarbikeride.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">www.milliondollarbikeride.org<\/a>.<\/p>\n<p>Plats: Highline Park Highline Park, 3160 Chestnut Street, Philadelphia PA<br \/>\n<em>Registrera dig p\u00e5 http:\/\/www.alumni.upenn.edu\/MDBR2015 och v\u00e4lj \"Emily's Entourage: Cystisk fibros.\" Cyklister kan registrera sig med eller utan krav p\u00e5 insamling av pengar.<\/em><\/p>\n<p><strong>F\u00f6rs\u00e4ljning av Insomnia Cookies till f\u00f6rm\u00e5n f\u00f6r v\u00e4lg\u00f6renhet<\/strong> Datum ska best\u00e4mmas<br \/>\nK\u00f6p l\u00e4ckra kakor p\u00e5 ett visst Insomnia Cookies-st\u00e4lle och en del av int\u00e4kterna kommer att doneras direkt till EE. Detaljerad information kommer att ges p\u00e5 Facebook, Instagram och Twitter.<\/p>\n<p><strong>Nyfiken p\u00e5 vad Emily's Entourage har haft f\u00f6r sig i \u00e5r? Ditt st\u00f6d har gjort det m\u00f6jligt f\u00f6r EE att:<\/strong><\/p>\n<ul>\n<li>\u00d6verg\u00e5 $1 MILLION i finansiering sedan v\u00e5r start 2011 !!!<\/li>\n<li>V\u00e4rd f\u00f6r ett vetenskapligt symposium om nonsensmutationer vid cystisk fibros med v\u00e4rldens fr\u00e4msta CF-kunniga fr\u00e5n bioteknik, akademi, l\u00e4kemedelsindustri och Cystic Fibrosis Foundation<\/li>\n<li><a href=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/SHS_7463.jpg\"><img fetchpriority=\"high\" decoding=\"async\" class=\"aligncenter size-medium wp-image-2460\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/SHS_7463-300x200.jpg\" alt=\"SHS_7463\" width=\"300\" height=\"200\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/SHS_7463-300x200.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/SHS_7463-600x400.jpg 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/SHS_7463-1024x683.jpg 1024w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/a>Formalisera sin organisationsstruktur genom att omformatera styrelsen och kommitt\u00e9erna<\/li>\n<li>Lansera en f\u00f6rnyad webbplatsdesign med ett snyggare utseende, mer l\u00e4ttanv\u00e4nd navigering och nya interaktiva funktioner<\/li>\n<li>Hj\u00e4lp Emily att ringa in 30 med en ny k\u00e4nsla av hopp f\u00f6r framtiden!!!!<\/li>\n<\/ul>\n<p><a href=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_058.jpg\"><img decoding=\"async\" class=\"aligncenter size-medium wp-image-2461\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_058-300x200.jpg\" alt=\"20141213_emilys_birthday_058\" width=\"300\" height=\"200\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_058-300x200.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_058-600x400.jpg 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_058-1024x683.jpg 1024w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_058.jpg 1200w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/a><\/p>\n<p>Och gott folk, vi \u00e4r l\u00e5ngt ifr\u00e5n klara. Fler sp\u00e4nnande tillk\u00e4nnagivanden kommer den h\u00e4r m\u00e5naden!<\/p>\n<p>H\u00e5ll utkik efter s\u00e4rskilda blogginl\u00e4gg under hela m\u00e5naden, bland annat kampanjen \"Bara f\u00f6r en dag\" d\u00e4r Emily skuggades av en kompis som inte var med i CF, nya styrelseledam\u00f6ter och mycket mer. Och det \u00e4r inte allt! Vi kommer ocks\u00e5 att vara aktiva p\u00e5 Instagram med ett hektiskt veckoschema med foton och p\u00e5 Twitter med ett nytt CF-faktum varje dag.<\/p>\n<p><a href=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/May-is-CF-Awareness-Month-Collage.jpg\"><img decoding=\"async\" class=\"aligncenter size-medium wp-image-2464\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/May-is-CF-Awareness-Month-Collage-300x300.jpg\" alt=\"May is CF Awareness Month Collage\" width=\"300\" height=\"300\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/May-is-CF-Awareness-Month-Collage-300x300.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/May-is-CF-Awareness-Month-Collage-100x100.jpg 100w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/May-is-CF-Awareness-Month-Collage-600x600.jpg 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/May-is-CF-Awareness-Month-Collage-150x150.jpg 150w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/May-is-CF-Awareness-Month-Collage.jpg 864w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/a><\/p>\n<p>Och sist men absolut inte minst...<br \/>\n<strong>RESERVERA DATUMET<\/strong> f\u00f6r den 4:e \u00e5rliga Evening with Emily's Entourage Gala l\u00f6rdagen den 5 december 2015. Skriv upp det i kalendern och ber\u00e4tta f\u00f6r dina v\u00e4nner!<\/p>\n<p>\u00c4ven om aktiviteterna p\u00e5 Facebook, Twitter, Instagram och v\u00e5r blogg \u00e4r roliga och lekfulla har de alla ett enkelt syfte: att skapa uppm\u00e4rksamhet och \u00f6ka medvetenheten om CF s\u00e5 att vi kan s\u00e4tta stopp f\u00f6r denna hemska sjukdom en g\u00e5ng f\u00f6r alla.<br \/>\nKommer du att ansluta dig till v\u00e5ra anstr\u00e4ngningar f\u00f6r att n\u00e5 dit?!<\/p>\n<p><strong>OMSLAGSFOTO F\u00d6R CF AWARENESS MONTH:<\/strong><br \/>\n<a href=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EE_CF-Awareness-Month_Cover-Photo.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-medium wp-image-2458\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EE_CF-Awareness-Month_Cover-Photo-300x111.jpg\" alt=\"EE_CF Awareness Month_Cover Photo\" width=\"300\" height=\"111\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EE_CF-Awareness-Month_Cover-Photo-300x111.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EE_CF-Awareness-Month_Cover-Photo-600x222.jpg 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EE_CF-Awareness-Month_Cover-Photo.jpg 850w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/a><br \/>\n<strong>PROFILFOTO F\u00d6R CF AWARENESS MONTH:<\/strong><\/p>\n<p><a href=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/madewithOver.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-medium wp-image-2468\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/madewithOver-300x200.jpg\" alt=\"madewithOver\" width=\"300\" height=\"200\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/madewithOver-300x200.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/madewithOver-600x400.jpg 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/madewithOver-1024x682.jpg 1024w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/madewithOver.jpg 1922w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>Emily's Entourage har m\u00e5nga saker planerade f\u00f6r att hj\u00e4lpa till att erk\u00e4nna och fira maj m\u00e5nad som National Cystic Fibrosis Awareness Month! Oavsett om du \u00e4r en lojal EE-medlem eller ny i detta fantastiska team, v\u00e4nligen ta en snabb stund f\u00f6r att l\u00e4ra dig om skillnaden du kan g\u00f6ra f\u00f6r att hj\u00e4lpa till att r\u00e4dda v\u00e5r otroliga Emily och alla ... <\/p>\n<div class=\"clear\"><\/div>\n<p><a href=\"https:\/\/www.emilysentourage.org\/sv\/make-some-noise-may-is-cystic-fibrosis-awareness-month\/\" class=\"excerpt-read-more\">L\u00e4s mer om<\/a><\/p>","protected":false},"author":59,"featured_media":3626,"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":"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":[1,6],"tags":[],"class_list":["post-2457","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","category-emilys-entourage-blog"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/20141213_emilys_birthday_0581.jpg","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/posts\/2457","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=2457"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/posts\/2457\/revisions"}],"predecessor-version":[{"id":20332,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/posts\/2457\/revisions\/20332"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/media\/3626"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/media?parent=2457"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/categories?post=2457"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/tags?post=2457"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}