{"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\/es\/lgmd2i\/2018\/05\/30\/cure-lgmd2i-foundation\/","title":{"rendered":"ORGANIZACI\u00d3N: Fundaci\u00f3n 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>NOMBRE DE LA ORGANIZACI\u00d3N<\/strong>:         Fundaci\u00f3n CureLGMD2i<\/p>\n<p><strong>P\u00c1GINA WEB:<\/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>EN QU\u00c9 SUBTIPO DE LGMD SE CENTRA SU ORGANIZACI\u00d3N:\u00a0 <\/strong><\/p>\n<p>LGMD2i y las distroglicanopat\u00edas (FKRP)<\/p>\n<p><strong>SI SE CENTRA EN UN SUBTIPO, \u00bfEXISTE UN REGISTRO Y C\u00d3MO PUEDEN INSCRIBIRSE LOS PACIENTES? <\/strong><\/p>\n<p>Registro FKRP en <a href=\"https:\/\/www.fkrp-registry.org\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.fkrp-registry.org<\/a><\/p>\n<p><strong>\u00bfEs su organizaci\u00f3n una organizaci\u00f3n sin \u00e1nimo de lucro? En caso afirmativo, de qu\u00e9 tipo:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>S\u00ed, organizaci\u00f3n ben\u00e9fica p\u00fablica exenta de impuestos 501 (c)(3) con sede en EE.UU.<\/p>\n<p><strong>QU\u00c9 INSPIR\u00d3 LA CREACI\u00d3N DE SU ORGANIZACI\u00d3N<\/strong>:<\/p>\n<p>CureLGMD2i fue fundada inicialmente como la Fundaci\u00f3n Samantha J. Brazzo por la familia Brazzo en 2011, despu\u00e9s de que su hija peque\u00f1a, Samantha, fuera diagnosticada con LGMD2i. Se dieron cuenta de que no hab\u00eda otras organizaciones que recaudaran fondos espec\u00edficamente para la investigaci\u00f3n de la 2i, as\u00ed que crearon esta fundaci\u00f3n sin \u00e1nimo de lucro para recaudar dinero y concienciar sobre la cura de esta enfermedad rara y progresiva.<\/p>\n<p><strong>\u00bfcu\u00e1l es la misi\u00f3n de su organizaci\u00f3n?<\/strong><\/p>\n<p>Recaudar fondos para concienciar y apoyar la investigaci\u00f3n cient\u00edfica orientada directamente a la creaci\u00f3n de un tratamiento o cura eficaces para la LGMD2i.<\/p>\n<p><strong>QU\u00c9 SERVICIOS PRESTA SU ORGANIZACI\u00d3N:<\/strong><\/p>\n<p>Apoyo financiero a la Conferencia Familiar sobre Distroglicanopat\u00eda en Iowa y a proyectos de investigaci\u00f3n para comprender mejor la progresi\u00f3n de la LGMD2i, el desarrollo de f\u00e1rmacos y la creaci\u00f3n de un programa exitoso de terapia g\u00e9nica para la LGMD2i.<\/p>\n<p>Hasta la fecha, la Fundaci\u00f3n CureLGMD2i ha aportado m\u00e1s de $400.000 a programas de investigaci\u00f3n que trabajan intensamente para establecer un tratamiento para la LGMD2i.<\/p>\n<p><strong>DE QU\u00c9 SE SIENTE M\u00c1S ORGULLOSA SU ORGANIZACI\u00d3N<\/strong><\/p>\n<p>Recientemente hemos patrocinado una reuni\u00f3n sobre terapia g\u00e9nica \"Into the Clinic\", celebrada en la Universidad de Massachusetts, que ha reunido a los principales cient\u00edficos y empresas del campo de la 2i para ofrecer informaci\u00f3n actualizada sobre el trabajo precl\u00ednico y la preparaci\u00f3n de ensayos cl\u00ednicos.  Esta reuni\u00f3n dio lugar a la creaci\u00f3n de un Grupo Directivo de Terapia G\u00e9nica LGMD2i, que est\u00e1 trabajando para ayudar a establecer un futuro ensayo cl\u00ednico.<\/p>\n<p><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre SU ORGANIZACI\u00d3N?<\/strong>:<\/p>\n<p>Somos la \u00fanica organizaci\u00f3n que acepta donaciones deducibles de impuestos y 100% se destina directamente a proyectos relacionados con la investigaci\u00f3n de la Distrofia Muscular de Cinturas Tipo 2I.<\/p>\n<p><strong>C\u00d3MO PUEDE PARTICIPAR LA GENTE EN EL APOYO A SU ORGANIZACI\u00d3N:<\/strong><\/p>\n<p>En estos momentos estamos haciendo un gran esfuerzo en Facebook para recaudar fondos para apoyar un futuro ensayo cl\u00ednico de terapia g\u00e9nica en LGMD2i. \"Pasa a la acci\u00f3n\" creando tu propia recaudaci\u00f3n de fondos en Facebook: cuenta a tu c\u00edrculo de amigos\/familiares c\u00f3mo te ha afectado la LGMD2i, qu\u00e9 har\u00edas cuando te curaras y pide donaciones para apoyar a CureLGMD2i. Tambi\u00e9n puedes compartir la pesta\u00f1a de donaciones de nuestro sitio web en <a href=\"https:\/\/curelgmd2i.com\/donations\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/curelgmd2i.com\/donations<\/a><\/p>\n<p><strong>CU\u00c1L ES LA MEJOR MANERA DE PONERSE EN CONTACTO CON SU ORGANIZACI\u00d3N:<\/strong><\/p>\n<p>P\u00f3ngase en contacto con Kelly Brazzo en kbrazzo@yahoo.com o env\u00edenos un mensaje a trav\u00e9s de nuestra p\u00e1gina de Facebook en <a href=\"https:\/\/www.facebook.com\/CureLGMD2i\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.facebook.com\/CureLGMD2i\u00a0<\/a><\/p>\n<p><strong>\u00bfLE GUSTAR\u00cdA A\u00d1ADIR ALGO M\u00c1S?<\/strong><\/p>\n<p>Si tiene un diagn\u00f3stico confirmado de LGMD2i, aseg\u00farese de inscribirse en el Registro Global FKRP en <a href=\"https:\/\/www.fkrp-registry.org\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.fkrp-registry.org<\/a>\u00a0 \u00a0 \u00a1#Sfuerzaenlosn\u00fameros!<\/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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