{"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\/de\/lgmd2i\/2018\/05\/30\/cure-lgmd2i-foundation\/","title":{"rendered":"ORGANISATION: Stiftung CureLGMD2i"},"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\/05\/Cure-LGMD2i-Foundation-1.jpg\" alt=\"\" class=\"lazyload wp-image-1953\"\/><\/figure>\n\n\n<p><strong>NAME DER ORGANISATION<\/strong>:         CureLGMD2i Stiftung<\/p>\n<p><strong>WEBSITE:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0<u><a href=\"http:\/\/www.curelgmd2i.com\" target=\"_blank\" rel=\"noopener noreferrer\">www.curelgmd2i.com<\/a><\/u><\/p>\n<p><strong>FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong> <u><a href=\"http:\/\/www.facebook.com\/CureLGMD2i\/\" target=\"_blank\" rel=\"noopener noreferrer\">www.facebook.com\/CureLGMD2i\/<\/a><\/u><\/p>\n<p>\u00a0<\/p>\n<p><strong>AUF WELCHEN UNTERTYP VON LGMD KONZENTRIERT SICH IHRE ORGANISATION:\u00a0 <\/strong><\/p>\n<p>LGMD2i und die Dystroglykanopathien (FKRP)<\/p>\n<p><strong>WENN SIE SICH AUF EINEN UNTERTYP KONZENTRIEREN, GIBT ES DANN EIN REGISTER UND WIE K\u00d6NNEN SICH PATIENTEN ANSCHLIESSEN? <\/strong><\/p>\n<p>FKRP-Register unter <a href=\"https:\/\/www.fkrp-registry.org\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.fkrp-registry.org<\/a><\/p>\n<p><strong>Ist Ihre Organisation eine Non-Profit-Organisation? Wenn ja, welche Art:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Ja, in den USA ans\u00e4ssige, steuerbefreite \u00f6ffentliche Wohlt\u00e4tigkeitsorganisation (501 (c)(3))<\/p>\n<p><strong>WAS HAT SIE BEI DER GR\u00dcNDUNG IHRER ORGANISATION INSPIRIERT?<\/strong>:<\/p>\n<p>CureLGMD2i wurde urspr\u00fcnglich als Samantha J. Brazzo Foundation von der Familie Brazzo im Jahr 2011 gegr\u00fcndet, nachdem bei ihrer kleinen Tochter Samantha LGMD2i diagnostiziert worden war. Sie stellten fest, dass es keine anderen Organisationen gab, die speziell f\u00fcr die Erforschung von 2i Gelder sammelten. Also gr\u00fcndeten sie diese gemeinn\u00fctzige Stiftung, um Geld zu sammeln und das Bewusstsein f\u00fcr eine Heilung dieser seltenen und fortschreitenden Erkrankung zu sch\u00e4rfen.<\/p>\n<p><strong>WAS IST DIE MISSION IHRER ORGANISATION:<\/strong><\/p>\n<p>Spenden zu sammeln, um das Bewusstsein f\u00fcr die Krankheit zu sch\u00e4rfen und die wissenschaftliche Forschung zu unterst\u00fctzen, die direkt auf die Entwicklung einer erfolgreichen Behandlung oder Heilung f\u00fcr LGMD2i ausgerichtet ist.<\/p>\n<p><strong>WELCHE DIENSTLEISTUNGEN BIETET IHRE ORGANISATION AN?<\/strong><\/p>\n<p>Finanzielle Unterst\u00fctzung der Dystroglykanopathie-Familienkonferenz in Iowa und von Forschungsprojekten zum besseren Verst\u00e4ndnis des Krankheitsverlaufs von LGMD2i, zur Entwicklung von Medikamenten und zum Aufbau eines erfolgreichen Gentherapieprogramms f\u00fcr LGMD2i.<\/p>\n<p>Bis heute hat die CureLGMD2i Foundation \u00fcber $400.000 f\u00fcr Forschungsprogramme zur Verf\u00fcgung gestellt, die mit Hochdruck an der Entwicklung einer Behandlung f\u00fcr LGMD2i arbeiten.<\/p>\n<p><strong>WORAUF IST IHRE ORGANISATION AM MEISTEN STOLZ:<\/strong><\/p>\n<p>Vor kurzem haben wir eine Gentherapie-Tagung \"Into the Clinic\" an der UMass gesponsert, bei der f\u00fchrende Wissenschaftler und Unternehmen im Bereich 2i zusammenkamen, um \u00fcber den aktuellen Stand der pr\u00e4klinischen Arbeit und der Vorbereitung klinischer Studien zu berichten.  Dieses Treffen f\u00fchrte zur Gr\u00fcndung einer LGMD2i-Gentherapie-Lenkungsgruppe, die an der Durchf\u00fchrung einer k\u00fcnftigen klinischen Studie arbeitet.<\/p>\n<p><strong>Was m\u00f6chten Sie, dass die Welt \u00fcber IHRE ORGANISATION erf\u00e4hrt?<\/strong>:<\/p>\n<p>Wir sind die einzige Organisation, die steuerlich absetzbare Spenden annimmt, wobei 100% direkt in Forschungsprojekte f\u00fcr Gliederg\u00fcrtel-Muskeldystrophie Typ 2I flie\u00dft.<\/p>\n<p><strong>WIE K\u00d6NNEN SICH MENSCHEN AN DER UNTERST\u00dcTZUNG IHRER ORGANISATION BETEILIGEN?<\/strong><\/p>\n<p>Zurzeit l\u00e4uft eine gro\u00dfe Spendenaktion auf Facebook, um eine zuk\u00fcnftige klinische Gentherapie-Studie f\u00fcr LGMD2i zu unterst\u00fctzen. \"Erz\u00e4hlen Sie Ihrem Freundes-\/Familienkreis, wie LGMD2i Sie beeinflusst hat, was Sie tun w\u00fcrden, wenn Sie geheilt w\u00fcrden, und bitten Sie um Spenden zur Unterst\u00fctzung von CureLGMD2i. Sie k\u00f6nnen auch den Spendentab auf unserer Website teilen unter <a href=\"https:\/\/curelgmd2i.com\/donations\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/curelgmd2i.com\/donations<\/a><\/p>\n<p><strong>WIE SIE IHRE ORGANISATION AM BESTEN KONTAKTIEREN K\u00d6NNEN:<\/strong><\/p>\n<p>Kontaktieren Sie Kelly Brazzo unter kbrazzo@yahoo.com oder senden Sie uns eine Nachricht \u00fcber unsere Facebook-Seite unter <a href=\"https:\/\/www.facebook.com\/CureLGMD2i\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.facebook.com\/CureLGMD2i\u00a0<\/a><\/p>\n<p><strong>GIBT ES SONST NOCH ETWAS, DAS SIE HINZUF\u00dcGEN M\u00d6CHTEN?<\/strong><\/p>\n<p>Wenn Sie eine best\u00e4tigte LGMD2i-Diagnose haben, registrieren Sie sich bitte im globalen FKRP-Register unter <a href=\"https:\/\/www.fkrp-registry.org\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.fkrp-registry.org<\/a>\u00a0 \u00a0 #St\u00e4rkeZahlen!<\/p>\n<p>\u00a0<\/p>\n<p>\u00a0<\/p>\n<p>\u00a0<\/p>","protected":false},"excerpt":{"rendered":"<p>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\/ [&hellip;]<\/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":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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