{"id":1916,"date":"2014-05-27T16:57:14","date_gmt":"2014-05-27T23:57:14","guid":{"rendered":"http:\/\/lw.screammedia.net\/?p=1916"},"modified":"2023-12-20T02:55:58","modified_gmt":"2023-12-20T07:55:58","slug":"ee-reflects-on-the-pastand-looks-to-the-future","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/ee-reflects-on-the-pastand-looks-to-the-future\/","title":{"rendered":"EE Ge\u00e7mi\u015fi Yans\u0131t\u0131yor... ve Gelece\u011fe Bak\u0131yor..."},"content":{"rendered":"

Ba\u015far\u0131l\u0131 bir KF Fark\u0131ndal\u0131k Ay\u0131 daha sona ererken, Emily's Entourage'da hepimiz ne kadar ilerledi\u011fimizi d\u00fc\u015f\u00fcnmek i\u00e7in bir dakikam\u0131z\u0131 ay\u0131r\u0131yoruz......<\/strong><\/p>\n

\u0130lk ba\u011f\u0131\u015f toplama e-postam\u0131zda \"g\u00f6nder\" tu\u015funa bast\u0131\u011f\u0131m\u0131zda, hangi ba\u011f\u0131\u015f hedefini belirleyece\u011fimizden veya hayallerimizin ne kadar y\u00fckselmesine izin verebilece\u011fimizden emin de\u011fildik. \u0130nan\u0131lmaz deste\u011finiz sayesinde, 3 y\u0131ldan k\u0131sa bir s\u00fcre i\u00e7inde $650,000'in \u00fczerinde ba\u011f\u0131\u015f toplad\u0131k! Bu rakam bizi hayrete d\u00fc\u015f\u00fcr\u00fcyor! Sadece hayat kurtaran ara\u015ft\u0131rmalara y\u00f6nelik somut ilerlemeyi temsil etti\u011fi i\u00e7in de\u011fil, ayn\u0131 zamanda Entourage'\u0131m\u0131z\u0131n ne kadar adanm\u0131\u015f ve g\u00fc\u00e7l\u00fc hale geldi\u011fini g\u00f6sterdi\u011fi i\u00e7in. Bu y\u0131lki y\u0131ll\u0131k \"Emily's Entourage ile Ak\u015fam\" etkinli\u011fi<\/a> 350'den fazla kat\u0131l\u0131mc\u0131m\u0131z vard\u0131 ve her biri y\u0131ll\u0131k kampanyam\u0131z i\u00e7in mesaj\u0131m\u0131z\u0131 yaymak \u00fczere kendi a\u011flar\u0131na ula\u015ft\u0131ktan sonra, Entourage'\u0131m\u0131z daha da geni\u015fledi.<\/p>\n

Fark\u0131ndal\u0131k mesaj\u0131m\u0131z\u0131 \u00e7ok geni\u015f bir alana yayd\u0131k, bunun kan\u0131t\u0131 olarak da Birden fazla \u00fcniversite kamp\u00fcs\u00fcnde EE b\u00f6l\u00fcmleri<\/a> ve \u0130mza ti\u015f\u00f6rtlerimizin resimleri<\/a> d\u00fcnyay\u0131 dola\u015f\u0131yor. Emily'nin sesi her ge\u00e7en g\u00fcn yeni dinleyicilere ula\u015f\u0131yor; Emily ulusal bas\u0131n<\/a> ve \u00fclke \u00e7ap\u0131nda konu\u015fmalar yapmak \u00fczere davet edilmi\u015ftir.<\/p>\n

\"BLOG<\/a> \"EMILY<\/a><\/p>\n

Bug\u00fcne kadar ba\u015fard\u0131klar\u0131m\u0131z bizi s\u00fcrekli olarak heyecanland\u0131r\u0131rken...... bir yandan da gelece\u011fe bak\u0131yoruz.<\/strong><\/p>\n

Peki, s\u0131rada ne var diye sorabilirsiniz?<\/em><\/p>\n

Gelece\u011fin ara\u015ft\u0131rmada yatt\u0131\u011f\u0131n\u0131 biliyoruz ve bu nedenle ge\u00e7ti\u011fimiz birka\u00e7 ay i\u00e7inde Emily'nin nadir g\u00f6r\u00fclen KF genetik mutasyonlar\u0131n\u0131 i\u00e7eren bir h\u00fccre hatt\u0131 olu\u015fturduk ve bunu d\u00fcnyan\u0131n d\u00f6rt bir yan\u0131ndaki laboratuvarlara da\u011f\u0131tt\u0131k. Umudumuz, bu h\u00fccre dizileri \u00fczerinde yap\u0131lacak ara\u015ft\u0131rmalar\u0131n, Emily ve di\u011fer pek \u00e7ok ki\u015fi, \u00f6zellikle de nadir KF mutasyonlar\u0131na sahip olanlar i\u00e7in bu hastal\u0131\u011f\u0131n seyrini de\u011fi\u015ftirecek yeni tedavilere ve at\u0131l\u0131mlara yol a\u00e7mas\u0131d\u0131r. Ka\u00e7\u0131rmak istemeyece\u011finiz baz\u0131 heyecan verici yeni ara\u015ft\u0131rma geli\u015fmelerini payla\u015fmak \u00fczereyiz, bu y\u00fczden bizi izlemeye devam edin!<\/p>\n

Her g\u00fcn hepinizden etkileniyor ve ilham al\u0131yoruz. Bize yeni bir ba\u011f\u0131\u015f toplama fikrini bildirmek i\u00e7in ula\u015ft\u0131\u011f\u0131n\u0131zda, yakla\u015fan bir seyahat i\u00e7in bir EE tank\u0131 sat\u0131n ald\u0131\u011f\u0131n\u0131zda, yeni bir destek\u00e7iden ba\u011f\u0131\u015f geldi\u011finde veya sosyal medya g\u00f6nderilerimizi payla\u015ft\u0131\u011f\u0131n\u0131zda, bir fark yaratt\u0131\u011f\u0131m\u0131z\u0131 biliyoruz.<\/strong><\/p>\n

S\u00f6z\u00fcm\u00fcz s\u00f6z, durmayaca\u011f\u0131z; Duramay\u0131z.<\/em>KF tedavi edilene veya kontrol alt\u0131na al\u0131nana kadar. Emily'nin ve KF ile ya\u015fayan di\u011fer herkesin t\u00fcm bunlar\u0131 ba\u015farma \u015fans\u0131na sahip olmas\u0131n\u0131 sa\u011flamaya kararl\u0131y\u0131z. ya\u015fam hedefleri ve hayalleri<\/a>.<\/p>\n

\"Emily<\/a><\/p>","protected":false},"excerpt":{"rendered":"

As another successful CF Awareness Month comes to a close, all of us at Emily\u2019s Entourage are taking a moment to reflect on how far we\u2019ve come\u2026\u2026 When we pressed \u201csend\u201d on our very first fundraising email, we weren\u2019t sure what donation goal to set or how high we could let our dreams soar. Thanks… <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":58,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"","_seopress_titles_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":[6],"tags":[],"class_list":["post-1916","post","type-post","status-publish","format-standard","hentry","category-emilys-entourage-blog"],"acf":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/1916","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\/58"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=1916"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/1916\/revisions"}],"predecessor-version":[{"id":20353,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/1916\/revisions\/20353"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=1916"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=1916"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=1916"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}