{"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\/pl\/lgmd2i\/2018\/05\/30\/cure-lgmd2i-foundation\/","title":{"rendered":"ORGANIZACJA: Fundacja CureLGMD2i"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NAZWA ORGANIZACJI<\/strong>: Fundacja CureLGMD2i<\/p>\n

STRONA INTERNETOWA:<\/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

NA JAKIM PODTYPIE LGMD KONCENTRUJE SI\u0118 TWOJA ORGANIZACJA:\u00a0 <\/strong><\/p>\n

LGMD2i i dystroglikanopatie (FKRP)<\/p>\n

JE\u015aLI KONCENTRUJESZ SI\u0118 NA PODTYPIE, CZY ISTNIEJE REJESTR I W JAKI SPOS\u00d3B PACJENCI MOG\u0104 DO NIEGO DO\u0141\u0104CZY\u0106? <\/strong><\/p>\n

Rejestr FKRP pod adresem https:\/\/www.fkrp-registry.org<\/a><\/p>\n

Czy Twoja organizacja jest organizacj\u0105 non-profit? Je\u015bli tak, to jakiego typu:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

Tak, ameryka\u0144ska organizacja charytatywna zwolniona z podatku 501 (c)(3)<\/p>\n

CO ZAINSPIROWA\u0141O POWSTANIE TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n

Fundacja CureLGMD2i zosta\u0142a pocz\u0105tkowo za\u0142o\u017cona jako Fundacja Samanthy J. Brazzo przez rodzin\u0119 Brazzo w 2011 roku, po tym jak u ich c\u00f3rki, Samanthy, zdiagnozowano LGMD2i. Zdali sobie spraw\u0119, \u017ce nie ma innych organizacji zbieraj\u0105cych fundusze na badania nad 2i, wi\u0119c stworzyli t\u0119 fundacj\u0119 non-profit, aby zbiera\u0107 pieni\u0105dze i \u015bwiadomo\u015b\u0107 w celu wyleczenia tej rzadkiej i post\u0119puj\u0105cej choroby.<\/p>\n

jaka jest misja twojej organizacji?<\/strong><\/p>\n

Zbieranie funduszy na szerzenie \u015bwiadomo\u015bci i wspieranie bada\u0144 naukowych, kt\u00f3re s\u0105 bezpo\u015brednio ukierunkowane na stworzenie skutecznej terapii lub lekarstwa na LGMD2i.<\/p>\n

JAKIE US\u0141UGI \u015aWIADCZY TWOJA ORGANIZACJA:<\/strong><\/p>\n

Zapewnienie wsparcia finansowego dla Konferencji Rodzinnej Dystroglikanopatii w Iowa oraz projekt\u00f3w badawczych maj\u0105cych na celu lepsze zrozumienie progresji LGMD2i, opracowanie lek\u00f3w i stworzenie skutecznego programu terapii genowej dla LGMD2i.<\/p>\n

Do tej pory Fundacja CureLGMD2i przekaza\u0142a ponad $400,000 na programy badawcze, kt\u00f3re intensywnie pracuj\u0105 nad stworzeniem metody leczenia LGMD2i.<\/p>\n

Z CZEGO TWOJA ORGANIZACJA JEST NAJBARDZIEJ DUMNA?<\/strong><\/p>\n

Ostatnio sponsorowali\u015bmy spotkanie \"Into the Clinic\" po\u015bwi\u0119cone terapii genowej, kt\u00f3re odby\u0142o si\u0119 na UMass i zgromadzi\u0142o najlepszych naukowc\u00f3w i firmy w dziedzinie 2i, aby przedstawi\u0107 aktualne informacje na temat prac przedklinicznych i gotowo\u015bci do bada\u0144 klinicznych. Spotkanie to zaowocowa\u0142o utworzeniem Grupy Steruj\u0105cej Terapi\u0105 Genow\u0105 LGMD2i, kt\u00f3ra pracuje nad pomoc\u0105 w ustanowieniu przysz\u0142ego badania klinicznego.<\/p>\n

Co chcesz, aby \u015bwiat dowiedzia\u0142 si\u0119 o TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n

Jeste\u015bmy jedyn\u0105 organizacj\u0105, kt\u00f3ra przyjmuje darowizny podlegaj\u0105ce odliczeniu od podatku, a kwota 100% jest przekazywana bezpo\u015brednio na projekty zwi\u0105zane z badaniami nad dystrofi\u0105 mi\u0119\u015bniow\u0105 obr\u0119czy ko\u0144czyny typu 2I.<\/p>\n

W JAKI SPOS\u00d3B LUDZIE MOG\u0104 ZAANGA\u017bOWA\u0106 SI\u0118 WE WSPIERANIE ORGANIZACJI:<\/strong><\/p>\n

Obecnie na Facebooku prowadzimy szeroko zakrojon\u0105 zbi\u00f3rk\u0119 funduszy na wsparcie przysz\u0142ego badania klinicznego terapii genowej w LGMD2i. \"Spring into Action\", tworz\u0105c w\u0142asn\u0105 zbi\u00f3rk\u0119 pieni\u0119dzy na Facebooku - powiedz swojemu kr\u0119gowi przyjaci\u00f3\u0142\/rodzinie, jak LGMD2i wp\u0142yn\u0119\u0142o na Ciebie, co by\u015b zrobi\u0142, gdyby\u015b zosta\u0142 wyleczony, i popro\u015b o darowizny na wsparcie CureLGMD2i. Mo\u017cesz r\u00f3wnie\u017c udost\u0119pni\u0107 zak\u0142adk\u0119 darowizny na naszej stronie internetowej pod adresem https:\/\/curelgmd2i.com\/donations<\/a><\/p>\n

JAKI JEST NAJLEPSZY SPOS\u00d3B KONTAKTU Z ORGANIZACJ\u0104:<\/strong><\/p>\n

Skontaktuj si\u0119 z Kelly Brazzo pod adresem kbrazzo@yahoo.com lub wy\u015blij wiadomo\u015b\u0107 za po\u015brednictwem naszej strony na Facebooku pod adresem https:\/\/www.facebook.com\/CureLGMD2i\u00a0<\/a><\/p>\n

CZY JEST CO\u015a JESZCZE, CO CHCIA\u0141BY\u015a DODA\u0106?<\/strong><\/p>\n

Osoby z potwierdzon\u0105 diagnoz\u0105 LGMD2i powinny zarejestrowa\u0107 si\u0119 w Globalnym Rejestrze FKRP pod adresem https:\/\/www.fkrp-registry.org<\/a>\u00a0 \u00a0 #Strengthinnumbers!<\/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\/pl\/lgmd2i\/2018\/05\/30\/cure-lgmd2i-foundation\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: CureLGMD2i Foundation - 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