{"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\/it\/lgmd2i\/2018\/05\/30\/cure-lgmd2i-foundation\/","title":{"rendered":"ORGANIZZAZIONE: Fondazione CureLGMD2i"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NOME DELL'ORGANIZZAZIONE<\/strong>: Fondazione CureLGMD2i<\/p>\n

SITO WEB:<\/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

SU QUALE SOTTOTIPO DI LGMD SI CONCENTRA LA VOSTRA ORGANIZZAZIONE:\u00a0 <\/strong><\/p>\n

LGMD2i e le distroglicanopatie (FKRP)<\/p>\n

SE CI SI CONCENTRA SU UN SOTTOTIPO, ESISTE UN REGISTRO E COME POSSONO ISCRIVERSI I PAZIENTI? <\/strong><\/p>\n

Registro FKRP presso https:\/\/www.fkrp-registry.org<\/a><\/p>\n

La vostra organizzazione \u00e8 una Non-Profit? Se s\u00ec, di che tipo:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

S\u00ec, ente di beneficenza pubblico esente da imposte con sede negli Stati Uniti (501 (c)(3)).<\/p>\n

COSA HA ISPIRATO LA CREAZIONE DELLA VOSTRA ORGANIZZAZIONE<\/strong>:<\/p>\n

CureLGMD2i \u00e8 stata inizialmente fondata come Samantha J. Brazzo Foundation dalla famiglia Brazzo nel 2011, dopo che alla loro giovane figlia, Samantha, \u00e8 stata diagnosticata la LGMD2i. I coniugi Brazzo si sono resi conto che non esistevano altre organizzazioni che raccogliessero fondi specificamente per la ricerca sulla 2i e hanno quindi creato questa fondazione senza scopo di lucro per raccogliere fondi e sensibilizzare l'opinione pubblica su una cura per questa patologia rara e progressiva.<\/p>\n

qual \u00e8 la missione della vostra organizzazione?<\/strong><\/p>\n

Raccogliere fondi per diffondere la consapevolezza e sostenere la ricerca scientifica orientata direttamente alla creazione di un trattamento o di una cura efficace per la LGMD2i.<\/p>\n

QUALI SERVIZI FORNISCE LA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n

Fornendo un sostegno finanziario per la Dystroglycanopathy Family Conference in Iowa e per progetti di ricerca volti a comprendere meglio la progressione della LGMD2i, lo sviluppo di farmaci e la creazione di un programma di terapia genica di successo per la LGMD2i.<\/p>\n

Ad oggi, la Fondazione CureLGMD2i ha erogato oltre $400.000 euro ai programmi di ricerca che stanno lavorando alacremente per stabilire una cura per la LGMD2i.<\/p>\n

DI COSA \u00c8 PI\u00d9 ORGOGLIOSA LA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n

Di recente abbiamo sponsorizzato un incontro sulla terapia genica \"Into the Clinic\", tenutosi presso la UMass, che ha riunito i migliori scienziati e aziende del settore 2i per fornire un aggiornamento sul lavoro preclinico e sulla preparazione alla sperimentazione clinica. L'incontro ha portato alla creazione di un gruppo direttivo per la terapia genica LGMD2i, che sta lavorando per contribuire alla realizzazione di una futura sperimentazione clinica.<\/p>\n

Cosa volete che il mondo sappia della vostra organizzazione?<\/strong>:<\/p>\n

Siamo l'unica organizzazione che accetta donazioni deducibili dalle tasse e il 100% \u00e8 destinato direttamente a progetti di ricerca sulla distrofia muscolare degli arti di tipo 2I.<\/p>\n

COME SI PU\u00d2 PARTECIPARE AL SOSTEGNO DELLA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n

In questo momento stiamo facendo una grande raccolta di fondi su Facebook per sostenere un futuro studio clinico di terapia genica per la LGMD2i. \"Spring into Action\" crea la tua raccolta fondi su Facebook: racconta alla tua cerchia di amici\/familiari come la LGMD2i ti ha colpito, cosa faresti quando sarai guarito e chiedi donazioni per sostenere CureLGMD2i. Potete anche condividere la scheda di donazione del nostro sito web all'indirizzo https:\/\/curelgmd2i.com\/donations<\/a><\/p>\n

QUAL \u00c8 IL MODO MIGLIORE PER CONTATTARE LA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n

Contattate Kelly Brazzo all'indirizzo kbrazzo@yahoo.com o inviateci un messaggio attraverso la nostra pagina Facebook all'indirizzo https:\/\/www.facebook.com\/CureLGMD2i\u00a0<\/a><\/p>\n

C'\u00c8 QUALCOS'ALTRO CHE VORREBBE AGGIUNGERE?<\/strong><\/p>\n

Se avete una diagnosi confermata di LGMD2i, assicuratevi di registrarvi nel Registro Globale FKRP all'indirizzo https:\/\/www.fkrp-registry.org<\/a>\u00a0 \u00a0 #Sforza di numeri!<\/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\/it\/lgmd2i\/2018\/05\/30\/cure-lgmd2i-foundation\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: CureLGMD2i Foundation - 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