{"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\/fr\/lgmd2i\/2018\/05\/30\/cure-lgmd2i-foundation\/","title":{"rendered":"ORGANISATION : Fondation CureLGMD2i"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NOM DE L'ORGANISATION<\/strong>: Fondation CureLGMD2i<\/p>\n

SITE 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

QUEL EST LE SOUS-TYPE DE LGMD SUR LEQUEL VOTRE ORGANISATION SE CONCENTRE :\u00a0 <\/strong><\/p>\n

LGMD2i et les dystroglycanopathies (FKRP)<\/p>\n

SI VOUS VOUS CONCENTREZ SUR UN SOUS-TYPE, EXISTE-T-IL UN REGISTRE ET COMMENT LES PATIENTS PEUVENT-ILS S'Y INSCRIRE ? <\/strong><\/p>\n

Registre FKRP \u00e0 l'adresse https:\/\/www.fkrp-registry.org<\/a><\/p>\n

Votre organisation est-elle \u00e0 but non lucratif ? Si oui, de quel type :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

Oui, organisme de bienfaisance public bas\u00e9 aux \u00c9tats-Unis et exon\u00e9r\u00e9 d'imp\u00f4t (501 (c)(3))<\/p>\n

CE QUI A INSPIR\u00c9 LA CR\u00c9ATION DE VOTRE ORGANISATION<\/strong>:<\/p>\n

CureLGMD2i a \u00e9t\u00e9 initialement cr\u00e9\u00e9e sous le nom de Samantha J. Brazzo Foundation par la famille Brazzo en 2011, apr\u00e8s que leur petite fille, Samantha, a \u00e9t\u00e9 diagnostiqu\u00e9e avec le LGMD2i. Ils se sont rendu compte qu'il n'y avait pas d'autres organisations qui collectaient des fonds sp\u00e9cifiquement pour la recherche sur le LGMD2i. Ils ont donc cr\u00e9\u00e9 cette fondation \u00e0 but non lucratif pour collecter des fonds et sensibiliser le public \u00e0 la recherche d'un rem\u00e8de pour cette maladie rare et \u00e9volutive.<\/p>\n

Quelle est la mission de votre organisation ?<\/strong><\/p>\n

Collecter des fonds pour sensibiliser le public et soutenir la recherche scientifique qui vise directement \u00e0 cr\u00e9er un traitement ou un rem\u00e8de efficace pour le LGMD2i.<\/p>\n

QUELS SONT LES SERVICES OFFERTS PAR VOTRE ORGANISATION :<\/strong><\/p>\n

Soutien financier \u00e0 la conf\u00e9rence de la famille de la dystroglycanopathie dans l'Iowa et \u00e0 des projets de recherche visant \u00e0 mieux comprendre la progression de la LGMD2i, le d\u00e9veloppement de m\u00e9dicaments et la mise en place d'un programme de th\u00e9rapie g\u00e9nique pour la LGMD2i qui soit couronn\u00e9 de succ\u00e8s.<\/p>\n

\u00c0 ce jour, la Fondation CureLGMD2i a vers\u00e9 plus de $400 000 euros \u00e0 des programmes de recherche qui travaillent avec acharnement \u00e0 la mise au point d'un traitement pour la LGMD2i.<\/p>\n

DE QUOI VOTRE ORGANISATION EST-ELLE LA PLUS FI\u00c8RE ?<\/strong><\/p>\n

Nous avons r\u00e9cemment parrain\u00e9 une r\u00e9union sur la th\u00e9rapie g\u00e9nique \"Into the Clinic\" qui s'est tenue \u00e0 UMass et qui a rassembl\u00e9 des scientifiques et des entreprises de premier plan dans le domaine de la th\u00e9rapie g\u00e9nique 2i pour faire le point sur les travaux pr\u00e9cliniques et l'\u00e9tat de pr\u00e9paration des essais cliniques. Cette r\u00e9union a abouti \u00e0 la cr\u00e9ation d'un groupe de pilotage de la th\u00e9rapie g\u00e9nique LGMD2i, qui travaille \u00e0 la mise en place d'un futur essai clinique.<\/p>\n

Que voulez-vous que le monde sache \u00e0 propos de VOTRE ORGANISATION ?<\/strong>:<\/p>\n

Nous sommes la seule organisation qui accepte les dons d\u00e9ductibles des imp\u00f4ts. 100% va directement aux projets de recherche sur la dystrophie musculaire des ceintures de type 2I.<\/p>\n

COMMENT LES GENS PEUVENT-ILS S'IMPLIQUER DANS LE SOUTIEN DE VOTRE ORGANISATION :<\/strong><\/p>\n

En ce moment, nous lan\u00e7ons une grande campagne de collecte de fonds sur Facebook pour soutenir un futur essai clinique de th\u00e9rapie g\u00e9nique pour la LGMD2i. \"Passez \u00e0 l'action en cr\u00e9ant votre propre collecte de fonds sur Facebook - dites \u00e0 votre cercle d'amis ou \u00e0 votre famille comment la LGMD2i vous a affect\u00e9, ce que vous feriez si vous \u00e9tiez gu\u00e9ri, et demandez des dons pour soutenir CureLGMD2i. Vous pouvez \u00e9galement partager l'onglet \"dons\" de notre site web \u00e0 l'adresse suivante https:\/\/curelgmd2i.com\/donations<\/a><\/p>\n

QUEL EST LE MEILLEUR MOYEN DE CONTACTER VOTRE ORGANISATION :<\/strong><\/p>\n

Contactez Kelly Brazzo \u00e0 l'adresse kbrazzo@yahoo.com ou envoyez-nous un message via notre page Facebook \u00e0 l'adresse suivante https:\/\/www.facebook.com\/CureLGMD2i\u00a0<\/a><\/p>\n

Y A-T-IL AUTRE CHOSE QUE VOUS AIMERIEZ AJOUTER ?<\/strong><\/p>\n

Si vous avez un diagnostic confirm\u00e9 de LGMD2i, n'oubliez pas de vous inscrire dans le registre mondial du PRFC \u00e0 l'adresse suivante https:\/\/www.fkrp-registry.org<\/a>\u00a0 \u00a0 #SRenforcerleschiffres !<\/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\/fr\/lgmd2i\/2018\/05\/30\/cure-lgmd2i-foundation\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: CureLGMD2i Foundation - 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