{"id":1798,"date":"2018-04-15T12:03:25","date_gmt":"2018-04-15T17:03:25","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1798"},"modified":"2018-04-15T12:03:25","modified_gmt":"2018-04-15T17:03:25","slug":"coalition-to-cure-calpain-3","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/lgmd2a\/2018\/04\/15\/coalition-to-cure-calpain-3\/","title":{"rendered":"ORGAN\u0130ZASYON: Calpain 3'\u00fc Tedavi Etme Koalisyonu"},"content":{"rendered":"<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27960%27%20height%3D%27720%27%20viewBox%3D%270%200%20960%20720%27%3E%3Crect%20width%3D%27960%27%20height%3D%27720%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2019\/10\/Coalition-to-Cure-Calpain-3-v2.png\" alt=\"\" class=\"lazyload wp-image-2874\"\/><\/figure>\n\n\n<p><strong>KURULU\u015eUN ADI<\/strong>:         Calpain 3'\u00fc Tedavi Etme Koalisyonu<\/p>\n<p><strong>WEB S\u0130TES\u0130:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <a href=\"http:\/\/www.curecalpain3.org\/\">CureCalpain3.org<\/a><\/p>\n<p><strong>FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><a href=\"https:\/\/www.facebook.com\/CureCalpain3\/\">Calpain Tedavisi Koalisyonu 3: LGMD2A\/Calpainopathy'nin \u00dcstesinden Gelmek<\/a><\/p>\n<p><strong>Twitter:\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0<\/strong><a href=\"https:\/\/twitter.com\/curecalpain3\">@CureCalpain3<\/a><\/p>\n<p>\u00a0<\/p>\n<p><strong>KURULU\u015eUNUZ HANGI\u0307 LGMD ALT TI\u0307PI\u0307NE ODAKLANIYOR:\u00a0 <\/strong><\/p>\n<p>LGMD2A, Calpainopathy'nin bir formu<\/p>\n<p><strong>BIR ALT T\u00dcRE ODAKLANIRSANIZ, BIR KAYIT DEFTERI VAR MI VE HASTALAR NASIL KATILABILIR? <\/strong><\/p>\n<p>Evet, k\u00fcresel LGMD2A Hasta Kayd\u0131n\u0131 tutuyoruz.  \u015eu adresten kaydolmak \u00e7ok kolay <a href=\"http:\/\/www.lgmd2a.org\">www.lgmd2a.org<\/a><\/p>\n<p><strong>Kurulu\u015funuz Kar Amac\u0131 G\u00fctmeyen bir kurulu\u015f mu? E\u011fer \u00f6yleyse, ne t\u00fcr:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Evet, biz ABD merkezli 501 (c)(3) vergiden muaf bir kamu yard\u0131m kurulu\u015fuyuz<\/p>\n<p><strong>KURULU\u015eUNUZUN KURULMASINA NE I\u0307LHAM VERDI\u0307?<\/strong>:<\/p>\n<p>Coalition to Cure Calpain 3 (C3), Calpainopathy'nin bir t\u00fcr\u00fc olan LGMD2A'n\u0131n biyolojisini anlamaya ve tedavisini bulmaya odaklanan ara\u015ft\u0131rma \u00e7abalar\u0131na fon sa\u011flamak amac\u0131yla 2010 y\u0131l\u0131nda kurulmu\u015ftur. Bu organizasyon, hastal\u0131k hakk\u0131nda bilgi eksikli\u011fi ve \u00e7ok az ara\u015ft\u0131rma yap\u0131ld\u0131\u011f\u0131 ger\u00e7e\u011finden dolay\u0131 hayal k\u0131r\u0131kl\u0131\u011f\u0131na u\u011frayan hastalar ve aileleri taraf\u0131ndan olu\u015fturuldu. Baz\u0131lar\u0131m\u0131z i\u00e7in kesin bir te\u015fhis koymak bile onlarca y\u0131l alm\u0131\u015ft\u0131.  Bilim insanlar\u0131, LGMD2A hastalar\u0131, aileleri, arkada\u015flar\u0131 ve toplumun geneli aras\u0131nda i\u015fbirli\u011fini te\u015fvik ederek bu az ara\u015ft\u0131r\u0131lm\u0131\u015f, az finanse edilmi\u015f \"yetim\" hastal\u0131\u011fa bir son verme arzumuz bizi motive ediyor.<\/p>\n<p><strong>KURULU\u015eUNUZUN MISYONU NEDIR?<\/strong><\/p>\n<p>C3, Calpainopathy'nin bir t\u00fcr\u00fc olan limb girdle muscular dystrophy type 2A'y\u0131 (LGMD2A) tedavi etmeye ve nihayetinde iyile\u015ftirmeye kendini adam\u0131\u015ft\u0131r. Misyonumuz, k\u00fcresel toplumu bu hastal\u0131k hakk\u0131nda e\u011fitirken y\u00fcksek potansiyelli ara\u015ft\u0131rma ve klinik deneyleri finanse etmektir.<\/p>\n<p><strong>KURULU\u015eUNUZ HANGI HIZMETLERI SA\u011eLIYOR:<\/strong><\/p>\n<p>- LGMD2A\/Calpainopathy'ye odaklanan ara\u015ft\u0131rmalara fon sa\u011flay\u0131n<\/p>\n<p>- LGMD2A\/Calpainopathy i\u00e7in k\u00fcresel hasta kayd\u0131n\u0131 s\u00fcrd\u00fcrmek<\/p>\n<p>- Web sitemiz, sosyal medya, bilimsel konferanslardaki varl\u0131\u011f\u0131m\u0131z ve e-posta ileti\u015fimlerimiz arac\u0131l\u0131\u011f\u0131yla k\u00fcresel toplumu (hastalar, aileleri ve genel kamuoyu ile birlikte bilimsel topluluk dahil) hastal\u0131k hakk\u0131nda e\u011fitmek<\/p>\n<p>- Facebook'ta hastalar ve aileleri i\u00e7in bir destek forumu sa\u011flay\u0131n (<a href=\"\/tr\/carol@curecalpain3.org\/\">e-posta C3 Hasta Sosyal Yard\u0131m Direkt\u00f6r\u00fc Carol Abraham<\/a> kat\u0131lmak i\u00e7in)<\/p>\n<p><strong>KURULU\u015eUNUZUN EN \u00c7OK GURUR DUYDU\u011eU \u015eEY NEDIR?<\/strong><\/p>\n<p>Kalpainopati ara\u015ft\u0131rmalar\u0131n\u0131 te\u015fvik etmek i\u00e7in y\u00fcksek kalibreli bilim insanlar\u0131n\u0131 \u00e7ekebildi\u011fimiz ve destekleyebildi\u011fimiz i\u00e7in gurur duyuyoruz. Dr. Melissa Spencer, 2010 y\u0131l\u0131ndaki kurulu\u015fumuzdan bu yana Dr. Kevin Campbell, Eric Hoffman ve Lou Kunkel ile birlikte \u00e7al\u0131\u015farak Bilimsel Dan\u0131\u015fma Kurulumuza liderlik etti. Dr. Jennifer Levy 2016 y\u0131l\u0131nda ilk C3 Bilimsel Direkt\u00f6r\u00fc olarak aram\u0131za kat\u0131ld\u0131 ve fon sa\u011flad\u0131\u011f\u0131m\u0131z ara\u015ft\u0131rma projelerinin say\u0131s\u0131n\u0131 iki kattan fazla art\u0131rd\u0131. Ba\u015flang\u0131\u00e7ta sadece bir fark yaratmaya \u00e7al\u0131\u015fma fikrinden ibaret olan vakf\u0131m\u0131z\u0131n, \u00f6nde gelen bilim insanlar\u0131 - Dr. Michele Calos, Lou Kunkel, Cathleen Lutz, Rita Perlingeiro, Isabelle Richard, Melissa Spencer, Volker Straub - taraf\u0131ndan y\u00fcr\u00fct\u00fclen kalpainopati ara\u015ft\u0131rmalar\u0131na yakla\u015f\u0131k $1,5 milyon dolar ay\u0131rm\u0131\u015f olmas\u0131 ger\u00e7ekten gurur duydu\u011fumuz bir \u015fey.<\/p>\n<p><strong>D\u00fcnyan\u0131n KURULU\u015eUNUZ hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n<p>Yak\u0131n zamanda, \u00e7oklu gen terapisi yakla\u015f\u0131mlar\u0131n\u0131n ara\u015ft\u0131r\u0131lmas\u0131n\u0131 finanse ederek LGMD2A i\u00e7in bir tedavi olarak gen terapisinin anla\u015f\u0131lmas\u0131n\u0131 h\u0131zland\u0131rmay\u0131 ama\u00e7layan bir Gen Terapisi Giri\u015fimi ba\u015flatt\u0131k. Mevcut veya gelecekteki Gen Terapisi Giri\u015fimi ara\u015ft\u0131rma projelerinden elde edilen sonu\u00e7lar olumlu olursa, LGMD2A hastalar\u0131 i\u00e7in klinik deneylerin ba\u015flat\u0131lmas\u0131na do\u011fru ilerlenebilir. Yeni projelere fon sa\u011flamaya devam ederken bizden gelecek duyurular i\u00e7in tetikte olun. <a href=\"http:\/\/www.curecalpain3.org\/research\">http:\/\/www.curecalpain3.org\/research<\/a><\/p>\n<p><strong>\u0130NSANLAR KURULU\u015eUNUZU DESTEKLEMEYE NASIL DAHIL OLABILIRLER?<\/strong><\/p>\n<p>Bir tedaviyi ara\u015ft\u0131rma laboratuvar\u0131ndan klinik denemeye ta\u015f\u0131mak uzun ve pahal\u0131 bir s\u00fcre\u00e7tir. \u0130nsanlar\u0131n kurulu\u015fumuzun misyonunu destekleyebilmelerinin en kritik yolu ba\u011f\u0131\u015fta bulunmakt\u0131r. Her bir dolar, bu kas erimesi hastal\u0131\u011f\u0131n\u0131 tedavi etme \u00e7abalar\u0131m\u0131zda fark yaratmaktad\u0131r.<\/p>\n<p>Ba\u011f\u0131\u015f\u00e7\u0131lar \u00fc\u00e7 \u015fekilde ba\u011f\u0131\u015f yapabilirler:<\/p>\n<p>&#8211; <a href=\"https:\/\/donatenow.networkforgood.org\/C3\">web sitemiz<\/a> (\u00e7evrimi\u00e7i)<\/p>\n<p>- bizim <a href=\"https:\/\/www.crowdrise.com\/o\/en\/campaign\/c3-gene-therapy-initiative\/coalitiontocurecalpa\">Crowdrise kampanyas\u0131<\/a> (\u00e7evrimi\u00e7i)<\/p>\n<p>- \u00e7ek ile posta yoluyla (\u00e7evrimd\u0131\u015f\u0131)<\/p>\n<p><a href=\"\/tr\/info@curecalpain3.org\/\">Bize e-posta g\u00f6nderin<\/a> adresinden ba\u011f\u0131\u015f formu isteyebilir veya indirebilirsiniz. <a href=\"http:\/\/files.constantcontact.com\/fc88c999301\/4a707677-bb13-4ccf-a5a7-d75c7630cb0e.pdf\">http:\/\/files.constantcontact.com\/fc88c999301\/4a707677-bb13-4ccf-a5a7-d75c7630cb0e.pdf<\/a><\/p>\n<p><strong>KURULU\u015eUNUZLA ILETI\u015eIME GE\u00c7MENIN EN IYI YOLU NEDIR?<\/strong><\/p>\n<p><a href=\"\/tr\/info@curecalpain3.org\/\">Bize e-posta g\u00f6nderin<\/a> at <a href=\"mailto:info@curecalpain3.org\">info@curecalpain3.org<\/a>. Cevap verece\u011fiz!<\/p>\n<p><strong>EKLEMEK ISTEDI\u011eINIZ BA\u015eKA BIR \u015eEY VAR MI?<\/strong><\/p>\n<p>E\u011fer sizde bir \u00e7e\u015fit ekstremite ku\u015fa\u011f\u0131 kas distrofisi oldu\u011funu biliyorsan\u0131z, l\u00fctfen t\u00fcr\u00fcn\u00fcz\u00fcn belirlenmesi i\u00e7in genetik testlerin yap\u0131lmas\u0131 konusunda \u0131srarc\u0131 olun. T\u00fcm LGMD kurulu\u015flar\u0131n\u0131n ve bilim camias\u0131n\u0131n bu hastal\u0131k grubu hakk\u0131nda \u00f6\u011frenmesi gereken daha \u00e7ok \u015fey var ve siz de uygun hasta kay\u0131tlar\u0131na kat\u0131larak yard\u0131mc\u0131 olabilirsiniz. Bir\u00e7ok destek grubunu ara\u015ft\u0131r\u0131n; yaln\u0131z de\u011filsiniz. L\u00fctfen kalpainopati hakk\u0131nda daha fazla bilgi edinmek ve bir tedavi veya \u00e7are bulmak i\u00e7in her g\u00fcn motive oldu\u011fumuzu ve \u00e7al\u0131\u015ft\u0131\u011f\u0131m\u0131z\u0131 bilin.<\/p>\n<p>\u00a0<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p>\u00a0<\/p>\n<p>\u00a0<\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF ORGANIZATION:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Coalition to Cure Calpain 3 WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2874,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,14,95],"tags":[82],"class_list":["post-1798","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2a","category-organization","tag-lgmd2a-calpainopathy"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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