{"id":5883,"date":"2017-05-04T00:32:43","date_gmt":"2017-05-04T04:32:43","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=5883"},"modified":"2018-02-14T12:12:50","modified_gmt":"2018-02-14T17:12:50","slug":"top-5-reasons-your-support-is-making-ee-unstoppable","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/top-5-reasons-your-support-is-making-ee-unstoppable\/","title":{"rendered":"Deste\u011finizin EE'yi Durdurulamaz Yapmas\u0131n\u0131n En \u00d6nemli 5 Nedeni"},"content":{"rendered":"

Emily's Entourage, Kistik Fibrozis'in nadir, anlams\u0131z mutasyonlar\u0131 i\u00e7in ara\u015ft\u0131rma ve ila\u00e7 geli\u015ftirmeyi h\u0131zland\u0131rmaya adanm\u0131\u015f, k\u00e2r amac\u0131 g\u00fctmeyen tek kurulu\u015ftur. \u0130\u015fte deste\u011finizin bu Entourage'\u0131 durdurulamaz hale getirmesinin nedeni:<\/span><\/p>\n

1. Ara\u015ft\u0131rma Silolar\u0131n\u0131n Par\u00e7alanmas\u0131<\/b><\/p>\n

Emily's Entourage, d\u00fcnya \u00e7ap\u0131nda yedi \u00e7ok disiplinli ekibe fon sa\u011flad\u0131 ve \u00e7e\u015fitli h\u00fccreler sa\u011flad\u0131 <\/span>-<\/span> nadi\u0307r hastalik ara\u015ftirmalarinin can damari <\/span>-<\/span> Say\u0131s\u0131z kuruma. Kilit oyuncular\u0131 bir araya getirerek, \u00fc\u00e7 y\u0131l i\u00e7inde b\u00fcy\u00fck bir klinik at\u0131l\u0131m ger\u00e7ekle\u015ftirmeyi hedefleyen benzersiz bir strateji geli\u015ftirdik. \u0130ddial\u0131 m\u0131? Evet, ama bu bizim oyunumuzun ad\u0131! En etkili ara\u015ft\u0131rma projelerini belirlemek ve en nitelikli ekiplere y\u00fcksek etkili finansman sa\u011flamak i\u00e7in d\u00fcnyaca \u00fcnl\u00fc Bilimsel Dan\u0131\u015fma Kurulumuzdan yararlan\u0131yoruz<\/span><\/p>\n

\"\"<\/p>\n

2. H\u0131zl\u0131 Takip At\u0131l\u0131mlar\u0131 <\/b><\/p>\n

Biz<\/span> Kamu, \u00f6zel sekt\u00f6r ve k\u00e2r amac\u0131 g\u00fctmeyen kurulu\u015flar aras\u0131nda benzersiz ortakl\u0131klar kurarak kritik ila\u00e7 geli\u015ftirme s\u00fcrecinin h\u0131z\u0131n\u0131 de\u011fi\u015ftirmek <\/span>-<\/span> Biyoteknolojiden ila\u00e7 sekt\u00f6r\u00fcne ve \u00fcniversitelere kadar. Emily's Entourage k\u0131sa bir s\u00fcre \u00f6nce Iowa \u00dcniversitesi'ndeki ara\u015ft\u0131rmac\u0131lar ve Philadelphia merkezli giri\u015fim \u015firketi Militia Hill Ventures ile bir araya gelerek KF i\u00e7in gen terapisine odaklanan yeni bir biyoteknoloji \u015firketi olan Talee Bio'yu kurdu. Bu benzersiz i\u015fbirli\u011fi, gen terapisindeki ilerlemeleri h\u0131zland\u0131rmak i\u00e7in risk sermayesinin g\u00fcc\u00fcn\u00fc kullan\u0131yor ve bizi her ge\u00e7en g\u00fcn KF'li herkes i\u00e7in bir tedaviye yakla\u015ft\u0131r\u0131yor.<\/span><\/p>\n

\"\"<\/p>\n

3.\u00a0<\/strong>K\u00fc\u00e7\u00fck Ba\u015flamak Ama B\u00fcy\u00fck Hayaller Kurmak<\/b><\/p>\n

Nonsense mutasyonlar Kistik Fibrozis pop\u00fclasyonunda nispeten nadirdir, ancak Kistik Fibrozisin yakla\u015f\u0131k 12%'sini olu\u015fturur. <\/span>hepsi <\/b>yakla\u015f\u0131k 'unu etkileyen genetik hastal\u0131klar <\/span>milyon<\/span> insanlar <\/span>D\u00fcnya \u00e7ap\u0131nda. Bu hastal\u0131klar aras\u0131nda kas distrofisi, kal\u0131tsal kan hastal\u0131klar\u0131 ve kanser de yer almaktad\u0131r. Hediyeler, yaln\u0131zca Kistik Fibrozis d\u00fcnyas\u0131n\u0131 etkilemekle kalmay\u0131p, di\u011fer genetik hastal\u0131klar \u00fczerinde de geni\u015f kapsaml\u0131 bir etkiye sahip olabilecek at\u0131l\u0131mlara g\u00fc\u00e7 vererek b\u00fcy\u00fck bir etkiye sahiptir.<\/span><\/p>\n

\"\"<\/p>\n

4. Hastalar\u0131 S\u00fcr\u00fcc\u00fc Koltu\u011funa Oturtmak<\/strong><\/p>\n

Genellikle yeterince finanse edilmeyen nadir hastal\u0131klar alan\u0131ndaki ara\u015ft\u0131rmalar\u0131 ilerletmek i\u00e7in bir yol haritas\u0131 olu\u015fturarak y\u0131k\u0131m\u0131n y\u00fcz\u00fc haline geldik. Bu yol haritas\u0131na getirdi\u011fimiz benzersiz yenilik nedir? Hasta s\u00fcr\u00fcc\u00fc koltu\u011funda oturuyor ve hastalar\u0131n ya\u015famlar\u0131n\u0131 bug\u00fcnden etkileyen ara\u015ft\u0131rmalar\u0131 g\u00fc\u00e7lendirmek i\u00e7in bilim camias\u0131yla yan yana \u00e7al\u0131\u015f\u0131yor. Emily gibi hastalar, hassas t\u0131p \u00e7a\u011f\u0131n\u0131n y\u00fcz\u00fc olan yorulmak bilmez savunucular haline gelerek hastal\u0131klar\u0131n\u0131n sorumlulu\u011funu \u00fcstleniyor ve ger\u00e7ek de\u011fi\u015fimi etkiliyor. \u00a0\u00a0<\/span><\/p>\n

\"\"<\/p>\n

5. \u00c7evreye G\u00fc\u00e7 Veren \u0130nsanlar<\/b><\/p>\n

2011 y\u0131l\u0131nda Emily'nin ailesinin oturma odas\u0131n\u0131n zemininde ba\u015flayan Emily's Entourage, hayat kurtaran at\u0131l\u0131mlar\u0131 desteklemek i\u00e7in d\u00fcnyay\u0131 sarsan $2.5 milyon toplad\u0131 - ve bunlar\u0131n hepsi Entourage'\u0131m\u0131z\u0131n sonsuz tutkusu ve g\u00fcc\u00fc sayesinde oldu. D\u00fcnyan\u0131n d\u00f6rt bir yan\u0131ndan binlerce destek\u00e7i, takip\u00e7i ve g\u00f6n\u00fcll\u00fcden olu\u015fan bu Entourage, sars\u0131lmaz bir azim, ba\u011fl\u0131l\u0131k ve Emily ile onun gibi herkesin bir gelecek umudunu hak etti\u011fine dair ortak bir inan\u00e7la birbirine ba\u011fl\u0131d\u0131r.<\/span><\/p>\n

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

Emily\u2019s Entourage is the only non-profit organization dedicated to fast-tracking research and drug development for rare, nonsense mutations of Cystic Fibrosis. Here\u2019s why your support is making this Entourage unstoppable: 1. Shattering Research Silos Emily\u2019s Entourage has funded seven multi-disciplinary teams across the globe and provided various cells \u2014 the lifeline of rare disease research… <\/p>\n

<\/div>\n

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