{"id":1952,"date":"2018-05-30T12:41:54","date_gmt":"2018-05-30T17:41:54","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1952"},"modified":"2018-05-30T12:41:54","modified_gmt":"2018-05-30T17:41:54","slug":"cure-lgmd2i-foundation","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/lgmd2i\/2018\/05\/30\/cure-lgmd2i-foundation\/","title":{"rendered":"ORGAN\u0130ZASYON: CureLGMD2i Vakf\u0131"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

KURULU\u015eUN ADI<\/strong>: CureLGMD2i Vakf\u0131<\/p>\n

WEB S\u0130TES\u0130:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0www.curelgmd2i.com<\/a><\/u><\/p>\n

FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong> www.facebook.com\/CureLGMD2i\/<\/a><\/u><\/p>\n

\u00a0<\/p>\n

KURULU\u015eUNUZ HANGI\u0307 LGMD ALT TI\u0307PI\u0307NE ODAKLANIYOR:\u00a0 <\/strong><\/p>\n

LGMD2i ve Distroglikanopatiler (FKRP)<\/p>\n

BIR ALT T\u00dcRE ODAKLANIRSANIZ, BIR KAYIT DEFTERI VAR MI VE HASTALAR NASIL KATILABILIR? <\/strong><\/p>\n

FKRP Kay\u0131t Merkezi https:\/\/www.fkrp-registry.org<\/a><\/p>\n

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

Evet, ABD merkezli 501 (c)(3) vergiden muaf kamu hay\u0131r kurumu<\/p>\n

KURULU\u015eUNUZUN KURULMASINA NE I\u0307LHAM VERDI\u0307?<\/strong>:<\/p>\n

CureLGMD2i ilk olarak, k\u00fc\u00e7\u00fck k\u0131zlar\u0131 Samantha'ya LGMD2i te\u015fhisi konulduktan sonra 2011 y\u0131l\u0131nda Brazzo ailesi taraf\u0131ndan Samantha J. Brazzo Vakf\u0131 olarak kuruldu. \u00d6zellikle 2i ara\u015ft\u0131rmalar\u0131 i\u00e7in fon toplayan ba\u015fka bir kurulu\u015f olmad\u0131\u011f\u0131n\u0131 fark ettiler, bu nedenle bu nadir ve ilerleyici durumun tedavisi i\u00e7in para ve fark\u0131ndal\u0131k yaratmak amac\u0131yla kar amac\u0131 g\u00fctmeyen bu vakf\u0131 kurdular.<\/p>\n

KURULU\u015eUNUZUN M\u0130SYONU NED\u0130R:<\/strong><\/p>\n

Do\u011frudan LGMD2i i\u00e7in ba\u015far\u0131l\u0131 bir tedavi veya \u00e7are yaratmaya y\u00f6nelik bilimsel ara\u015ft\u0131rmalar\u0131 desteklemek ve fark\u0131ndal\u0131\u011f\u0131 yaymak i\u00e7in fon toplamak.<\/p>\n

KURULU\u015eUNUZ HANGI HIZMETLERI SA\u011eLIYOR:<\/strong><\/p>\n

Iowa'daki Distroglikanopati Aile Konferans\u0131 ve LGMD2i'nin ilerleyi\u015fini daha iyi anlamak, ila\u00e7 geli\u015ftirmek ve LGMD2i i\u00e7in ba\u015far\u0131l\u0131 bir gen terapisi program\u0131 olu\u015fturmak i\u00e7in ara\u015ft\u0131rma projelerine mali destek sa\u011flamak.<\/p>\n

CureLGMD2i Vakf\u0131 bug\u00fcne kadar LGMD2i i\u00e7in bir tedavi olu\u015fturmak \u00fczere agresif bir \u015fekilde \u00e7al\u0131\u015fan ara\u015ft\u0131rma programlar\u0131na $400.000'in \u00fczerinde destek sa\u011flam\u0131\u015ft\u0131r.<\/p>\n

KURULU\u015eUNUZUN EN \u00c7OK GURUR DUYDU\u011eU \u015eEY NEDIR?<\/strong><\/p>\n

En son UMass'ta d\u00fczenlenen ve 2i alan\u0131ndaki en iyi bilim insanlar\u0131n\u0131 ve \u015firketleri bir araya getirerek klinik \u00f6ncesi \u00e7al\u0131\u015fmalar ve klinik denemeye haz\u0131rl\u0131k konusunda bir g\u00fcncelleme sa\u011flayan \"Klini\u011fe Do\u011fru\" gen terapisi toplant\u0131s\u0131na sponsor olduk. Bu toplant\u0131 sonucunda LGMD2i Gen Terapisi Y\u00f6nlendirme Grubu olu\u015fturuldu ve bu grup gelecekteki bir klinik ara\u015ft\u0131rman\u0131n olu\u015fturulmas\u0131na yard\u0131mc\u0131 olmak i\u00e7in \u00e7al\u0131\u015f\u0131yor.<\/p>\n

D\u00fcnyan\u0131n KURULU\u015eUNUZ hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n

Vergiden d\u00fc\u015f\u00fclebilir ba\u011f\u0131\u015flar\u0131 kabul eden tek kurulu\u015fuz ve 100% do\u011frudan Limb Girdle Muscular Dystrophy Tip 2I ile ilgili ara\u015ft\u0131rma projelerine aktar\u0131lmaktad\u0131r.<\/p>\n

\u0130NSANLAR KURULU\u015eUNUZU DESTEKLEMEYE NASIL DAHIL OLABILIRLER?<\/strong><\/p>\n

\u015eu anda Facebook'ta LGMD2i'de gelecekteki bir gen terapisi klinik denemesini desteklemek i\u00e7in b\u00fcy\u00fck bir ba\u011f\u0131\u015f toplama kampanyas\u0131 y\u00fcr\u00fct\u00fcyoruz. Kendi Facebook ba\u011f\u0131\u015f kampanyan\u0131z\u0131 olu\u015fturarak \"Harekete Ge\u00e7in\" - arkada\u015f \u00e7evrenize\/ailenize LGMD2i'nin sizi nas\u0131l etkiledi\u011fini, tedavi oldu\u011funuzda ne yapaca\u011f\u0131n\u0131z\u0131 anlat\u0131n ve CureLGMD2i'yi desteklemek i\u00e7in ba\u011f\u0131\u015f isteyin. Ba\u011f\u0131\u015f sekmesini \u015fu adresteki web sitemizde de payla\u015fabilirsiniz https:\/\/curelgmd2i.com\/donations<\/a><\/p>\n

KURULU\u015eUNUZLA ILETI\u015eIME GE\u00c7MENIN EN IYI YOLU NEDIR?<\/strong><\/p>\n

Kelly Brazzo ile kbrazzo@yahoo.com adresinden ileti\u015fime ge\u00e7in veya Facebook sayfam\u0131z \u00fczerinden bize mesaj g\u00f6nderin https:\/\/www.facebook.com\/CureLGMD2i\u00a0<\/a><\/p>\n

EKLEMEK ISTEDI\u011eINIZ BA\u015eKA BIR \u015eEY VAR MI?<\/strong><\/p>\n

Do\u011frulanm\u0131\u015f bir LGMD2i tan\u0131n\u0131z varsa - l\u00fctfen \u015fu adresten K\u00fcresel FKRP Kay\u0131t Defterine kaydoldu\u011funuzdan emin olun https:\/\/www.fkrp-registry.org<\/a>\u00a0 \u00a0 #Sg\u00fc\u00e7l\u00fc say\u0131lar!<\/p>\n

\u00a0<\/p>\n

\u00a0<\/p>\n

\u00a0<\/p>","protected":false},"excerpt":{"rendered":"

NAME OF ORGANIZATION:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 CureLGMD2i Foundation WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0www.curelgmd2i.com FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 www.facebook.com\/CureLGMD2i\/ […]<\/p>","protected":false},"author":1,"featured_media":1953,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,35,95],"tags":[36],"class_list":["post-1952","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2i","category-organization","tag-lgmd2i"],"acf":[],"yoast_head":"\nORGANIZATION: CureLGMD2i Foundation - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/www.lgmd-info.org\/tr\/lgmd2i\/2018\/05\/30\/cure-lgmd2i-foundation\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: CureLGMD2i Foundation - 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