{"id":2259,"date":"2018-09-21T11:47:18","date_gmt":"2018-09-21T16:47:18","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2259"},"modified":"2018-09-21T11:47:18","modified_gmt":"2018-09-21T16:47:18","slug":"beyond-labels-limitations","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/lgmd2a\/2018\/09\/21\/beyond-labels-limitations\/","title":{"rendered":"ORGANIZACI\u00d3N: M\u00e1s all\u00e1 de etiquetas y limitaciones"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NOMBRE DE LA ORGANIZACI\u00d3N<\/strong>: M\u00e1s all\u00e1 de etiquetas y limitaciones\u00a0<\/p>\n

P\u00c1GINA WEB:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0www.BeyondLabelsLimitations.com<\/a><\/p>\n

FACEBOOK:\u00a0\u00a0 \u00a0\u00a0<\/strong>https:\/\/www.facebook.com\/groups\/29111827568\/<\/a><\/p>\n

Canal YouTube:\u00a0 \u00a0<\/strong>www.youtube.com\/user\/John71377<\/a><\/p>\n

\u00a0<\/strong><\/p>\n

EN QU\u00c9 SUBTIPO DE LGMD SE CENTRA SU ORGANIZACI\u00d3N:\u00a0 <\/strong><\/p>\n

LGMD2A \/ Calpainopat\u00eda<\/p>\n

SI SE CENTRA EN UN SUBTIPO, \u00bfEXISTE UN REGISTRO Y C\u00d3MO PUEDEN INSCRIBIRSE LOS PACIENTES? <\/strong><\/p>\n

Coalici\u00f3n para Curar la Calpa\u00edna 3<\/a> mantiene el Registro mundial de pacientes de LGMD2A<\/a> a la que puede accederse en l\u00ednea.<\/p>\n

\u00bfES SU ORGANIZACI\u00d3N UNA ORGANIZACI\u00d3N SIN \u00c1NIMO DE LUCRO?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

S\u00ed, somos una organizaci\u00f3n sin \u00e1nimo de lucro 501(c)3.<\/p>\n

QU\u00c9 INSPIR\u00d3 LA CREACI\u00d3N DE SU ORGANIZACI\u00d3N<\/strong>:<\/p>\n

Yo, John C. Graybill II, fund\u00e9 BL&L por dos razones. La primera era recaudar fondos para la investigaci\u00f3n. Desde 1995 hasta 2006, cada a\u00f1o iba a ver a mi neur\u00f3logo y me dec\u00eda que no hab\u00eda novedades en cuanto a tratamiento. Quer\u00eda cambiar esa situaci\u00f3n. La segunda raz\u00f3n por la que cre\u00e9 BL&L fue para concienciar a la gente a trav\u00e9s de mis v\u00eddeos. En aquel momento no hab\u00eda nadie que grabara su evoluci\u00f3n de la LGMD y no hab\u00eda nadie con quien yo pudiera conectar. Haciendo v\u00eddeos abr\u00ed la puerta a que otros conectaran conmigo y no se sintieran solos. Mis v\u00eddeos est\u00e1n disponibles en YouTube<\/a><\/p>\n

CU\u00c1L ES LA MISI\u00d3N DE SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

Apoyar la investigaci\u00f3n cient\u00edfica rigurosa para LGMD2A y educar a otros sobre el curso de la enfermedad, tal y como se cuenta a trav\u00e9s de mi experiencia personal.<\/p>\n

QU\u00c9 SERVICIOS PRESTA SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

Sistema de apoyo entre iguales en l\u00ednea a trav\u00e9s de Facebook. El grupo que he creado es \"Distrofia muscular de cinturas: M\u00e1s all\u00e1 de etiquetas y limitaciones<\/a>\"y actualmente cuenta con m\u00e1s de 3.000 miembros de todo el mundo. El grupo est\u00e1 abierto a cualquier persona con cualquier forma de LGMD y en cualquier fase del proceso de la enfermedad.<\/p>\n

DE QU\u00c9 SE SIENTE M\u00c1S ORGULLOSA SU ORGANIZACI\u00d3N<\/strong><\/p>\n

Contribuci\u00f3n de $50.000 a la investigaci\u00f3n.<\/p>\n

\u00bfQu\u00e9 quiere que el mundo sepa sobre SU ORGANIZACI\u00d3N?<\/strong>:<\/p>\n

Que si quieres marcar la diferencia puedes hacerlo dando un paso cada vez.<\/p>\n

C\u00d3MO PUEDE PARTICIPAR LA GENTE EN EL APOYO A SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

Haga un donativo y\/o \u00fanase al grupo de Facebook de la LGMD. Se pueden hacer donaciones en l\u00ednea<\/a>.<\/p>\n

CU\u00c1L ES LA MEJOR MANERA DE PONERSE EN CONTACTO CON SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

P\u00f3ngase en contacto con John C. Graybill II por correo electr\u00f3nico en jcg713@aol.com<\/p>\n

\u00bfLE GUSTAR\u00cdA A\u00d1ADIR ALGO M\u00c1S?<\/strong><\/p>\n

La cura est\u00e1 ah\u00ed fuera.<\/p>\n

\u00a0<\/p>","protected":false},"excerpt":{"rendered":"

NAME OF ORGANIZATION:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0Beyond Labels & Limitations\u00a0 WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 […]<\/p>","protected":false},"author":1,"featured_media":2260,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,14,95],"tags":[],"class_list":["post-2259","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2a","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: Beyond Labels & Limitations - 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\/es\/lgmd2a\/2018\/09\/21\/beyond-labels-limitations\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Beyond Labels & Limitations - 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