{"id":2111,"date":"2018-07-26T10:25:01","date_gmt":"2018-07-26T15:25:01","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2111"},"modified":"2018-07-26T10:25:01","modified_gmt":"2018-07-26T15:25:01","slug":"organization-jain-foundation","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/lgmd2b\/2018\/07\/26\/organization-jain-foundation\/","title":{"rendered":"ORGAN\u0130ZASYON: Jain Vakf\u0131\u00a0"},"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\/2018\/07\/Jain.Foundation.png\" alt=\"\" class=\"lazyload wp-image-2107\"\/><\/figure>\n\n\n<p><strong>KURULU\u015eUN ADI<\/strong>:  Jain Vakf\u0131\u00a0\u00a0\u00a0<\/p>\n<p><strong>WEB S\u0130TES\u0130:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <a href=\"http:\/\/www.jain-foundation.org\">www.jain-foundation.org<\/a><\/p>\n<p><strong>FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong> <a href=\"http:\/\/www.facebook.com\/JainFoundation\/\">www.facebook.com\/JainFoundation\/<\/a><\/p>\n<p><strong>TWITTER:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong> <a href=\"https:\/\/twitter.com\/JainFoundation\">https:\/\/twitter.com\/JainFoundation<\/a><\/p>\n<p><strong>KURULU\u015eUNUZ HANGI\u0307 LGMD ALT TI\u0307PI\u0307NE ODAKLANIYOR:\u00a0 <\/strong><\/p>\n<p>Disferlin genindeki mutasyonlar\u0131n neden oldu\u011fu disferlinopati (LGMD2B\/Miyoshi Miyopati Tip 1).<\/p>\n<p><strong>BIR ALT T\u00dcRE ODAKLANIRSANIZ, BIR KAYIT DEFTERI VAR MI VE HASTALAR NASIL KATILABILIR? <\/strong><\/p>\n<p>Evet, disferlinopatili hastalar i\u00e7in bir kay\u0131t defterimiz var. Hastalar\u0131 patients@jain-foundation.org adresinden bizimle ileti\u015fime ge\u00e7meye te\u015fvik ediyoruz; kay\u0131t hakk\u0131nda daha fazla ayr\u0131nt\u0131 \u015fu adreste bulunabilir <a href=\"https:\/\/www.jain-foundation.org\/patient-physician-resources\/patient-registration\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.jain-foundation.org\/patient-physician-resources\/patient-registration<\/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>ABD'de k\u00e2r amac\u0131 g\u00fctmeyen \u00f6zel bir vak\u0131f olarak kuruldu\u011fumuz i\u00e7in halktan ba\u011f\u0131\u015f talep etmiyoruz.<\/p>\n<p><strong>KURULU\u015eUNUZUN KURULMASINA NE I\u0307LHAM VERDI\u0307?<\/strong>:<\/p>\n<p>Kurucumuzun o\u011fluna disferlinopati te\u015fhisi konmas\u0131 sonucunda ba\u015flad\u0131k. Ailenin di\u011fer hastalar ve ara\u015ft\u0131rmac\u0131larla temasa ge\u00e7mesinin ard\u0131ndan 2005 y\u0131l\u0131nda Jain Vakf\u0131 kuruldu.<\/p>\n<p><strong>KURULU\u015eUNUZUN MISYONU NEDIR?<\/strong><\/p>\n<p>Disferlinopati i\u00e7in tedaviler ve k\u00fcrler geli\u015ftirmek.<\/p>\n<p><strong>KURULU\u015eUNUZ HANGI HIZMETLERI SA\u011eLIYOR:<\/strong><\/p>\n<p>Biz \u00f6ncelikle hasta hizmetlerinden ziyade tedavilerin ara\u015ft\u0131r\u0131lmas\u0131 ve geli\u015ftirilmesine odaklan\u0131yoruz. Ancak, hastalar olmadan tedavileri test etmek veya klinik \u00e7al\u0131\u015fmalar i\u00e7in sonu\u00e7 \u00f6l\u00e7\u00fctlerini belirlemek m\u00fcmk\u00fcn de\u011fildir ve LGMD'nin t\u00fcm formlar\u0131 i\u00e7in te\u015fhis b\u00fcy\u00fck bir zorluk olmaya devam etmektedir. Bu nedenle bir hasta kayd\u0131 tutuyoruz ve disferlinopatisi olmas\u0131 muhtemel hastalara tan\u0131lar\u0131n\u0131 netle\u015ftirmeye yard\u0131mc\u0131 olmak ve klinik \u00e7al\u0131\u015fmalara ve nihayetinde tedavilere eri\u015fmelerini sa\u011flamak i\u00e7in tan\u0131 hizmetleri sunuyoruz.<\/p>\n<p><strong>KURULU\u015eUNUZUN EN \u00c7OK GURUR DUYDU\u011eU \u015eEY NEDIR?<\/strong><\/p>\n<p>Sekiz \u00fclkedeki 15 klinik merkezde yakla\u015f\u0131k 200 hastay\u0131 kapsayan Disferlinopati Klinik Sonu\u00e7 \u00c7al\u0131\u015fmas\u0131 adl\u0131 \u00e7ok y\u0131ll\u0131 bir klinik \u00e7al\u0131\u015fmay\u0131 hen\u00fcz tamamlad\u0131k. Bu \u00e7al\u0131\u015fma, disferlinopatinin kesin bir do\u011fal ge\u00e7mi\u015fini ortaya koymu\u015f ve bir tedavinin etkili olup olmad\u0131\u011f\u0131n\u0131 belirlemek i\u00e7in disferlinopatiye y\u00f6nelik klinik \u00e7al\u0131\u015fmalarda kullan\u0131lacak en iyi sonu\u00e7 \u00f6l\u00e7\u00fctlerini (ne \u00f6l\u00e7\u00fclecek, ka\u00e7 ki\u015fide, ne kadar s\u00fcreyle \u00f6l\u00e7\u00fclecek) belirlemi\u015ftir. Bu \u00e7al\u0131\u015fma, bulgular\u0131m\u0131z\u0131n do\u011frulanaca\u011f\u0131, 100 hastan\u0131n daha kat\u0131labilece\u011fi ve d\u00f6rt yeni t\u0131p merkezinin dahil olaca\u011f\u0131 bir sonraki a\u015famaya ge\u00e7mek \u00fczeredir.<\/p>\n<p><strong>D\u00fcnyan\u0131n KURULU\u015eUNUZ hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n<p>Disferlinopatiyi tedavi etmek i\u00e7in gen terapisi, di\u011fer hastal\u0131klar i\u00e7in piyasada bulunan ila\u00e7lar\u0131n yeniden kullan\u0131m\u0131 ve yeni ila\u00e7lar\u0131n geli\u015ftirilmesi dahil olmak \u00fczere bir\u00e7ok yakla\u015f\u0131m\u0131 takip ediyoruz. Gen terapisi i\u00e7in, \u015fu anda disferlinopati i\u00e7in bir \"\u00e7ift vekt\u00f6r\" AAV gen terapisi geli\u015ftiren Myonexus ile yak\u0131n bir \u015fekilde \u00e7al\u0131\u015f\u0131yoruz. Ayr\u0131ca, \u015fimdiye kadar 15'in \u00fczerinde aday ila\u00e7 tedavisini klinik \u00f6ncesi \u00e7al\u0131\u015fmalarda disferlinopatili farelerde test ettik ve her zaman yeni tedavi se\u00e7eneklerini ara\u015ft\u0131r\u0131yor ve test ediyoruz. Bu tedavilerden bir veya daha fazlas\u0131n\u0131n disferlinopati i\u00e7in bir fayda sa\u011flayaca\u011f\u0131n\u0131 umuyoruz.<\/p>\n<p><strong>\u0130NSANLAR KURULU\u015eUNUZU DESTEKLEMEYE NASIL DAHIL OLABILIRLER?<\/strong><\/p>\n<p>Halktan para toplamad\u0131\u011f\u0131m\u0131z i\u00e7in hastalardan ve di\u011fer ki\u015filerden istedi\u011fimiz destek Dysferlin Registry'ye kat\u0131lmalar\u0131, klinik \u00e7al\u0131\u015fmalara kat\u0131lmay\u0131 d\u00fc\u015f\u00fcnmeleri, bu hastal\u0131k hakk\u0131nda fark\u0131ndal\u0131k yaratmalar\u0131 ve topluma dahil olmalar\u0131d\u0131r. Nadir hastal\u0131klarda, g\u00fc\u00e7l\u00fc bir savunuculuk organizasyonunun ve hasta\/aile toplulu\u011funun varl\u0131\u011f\u0131n\u0131n tedavilerin geli\u015ftirilmesinde kritik \u00f6neme sahip oldu\u011fu a\u00e7\u0131k\u00e7a g\u00f6r\u00fclmektedir. Jain Vakf\u0131 bu organizasyonu sa\u011flayabilir, ancak g\u00fc\u00e7l\u00fc bir topluluk olu\u015fturmak i\u00e7in sizin deste\u011finize ihtiyac\u0131m\u0131z var!<\/p>\n<p><strong>KURULU\u015eUNUZLA ILETI\u015eIME GE\u00c7MENIN EN IYI YOLU NEDIR?<\/strong><\/p>\n<p>Disferlinopati te\u015fhisi konulan veya disferlinopati oldu\u011fundan \u015f\u00fcphelenilen hastalar patients@jain-foundation.org adresinden bizimle ileti\u015fime ge\u00e7ebilirler. Ayr\u0131ca, insanlar\u0131 disferlinopati ve ara\u015ft\u0131rma programlar\u0131m\u0131z hakk\u0131nda bir\u00e7ok bilgi i\u00e7eren web sitemizi ziyaret etmeye te\u015fvik ediyoruz.<\/p>\n<p><strong>EKLEMEK ISTEDI\u011eINIZ BA\u015eKA BIR \u015eEY VAR MI?<\/strong><\/p>\n<p>Tedavi ve k\u00fcr geli\u015ftirme hedefimizin \u00f6n\u00fcndeki engelleri y\u0131kmaya odaklanm\u0131\u015f durumday\u0131z. Bunlar aras\u0131nda, olas\u0131 tedavileri belirlememize yard\u0131mc\u0131 olabilecek bilimsel bilgi bo\u015fluklar\u0131n\u0131 doldurmak, ba\u015far\u0131l\u0131 klinik \u00e7al\u0131\u015fmalar\u0131n y\u00fcr\u00fct\u00fclmesine olanak sa\u011flamak i\u00e7in hastal\u0131\u011f\u0131n daha iyi bir klinik anlay\u0131\u015f\u0131n\u0131 kazanmak, denemelerin verimli bir \u015fekilde doldurulabilmesi i\u00e7in Dysferlin Kay\u0131t Defterini kullanarak ilgili bir hasta toplulu\u011funu s\u00fcrd\u00fcrmek ve ileriye d\u00f6n\u00fck tedavilerin klinik \u00f6ncesi ve klinik testlerini yapmak yer almaktad\u0131r.<\/p>\n<p>\u00a0<\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF ORGANIZATION:\u00a0 Jain Foundation\u00a0\u00a0\u00a0 WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 www.jain-foundation.org FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 www.facebook.com\/JainFoundation\/ [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2107,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,22,95],"tags":[],"class_list":["post-2111","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2b","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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