{"id":3076,"date":"2019-10-22T10:36:44","date_gmt":"2019-10-22T15:36:44","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3076"},"modified":"2019-10-22T10:36:44","modified_gmt":"2019-10-22T15:36:44","slug":"lgmd-1d-foundation","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/organization-interview\/2019\/10\/22\/lgmd-1d-foundation\/","title":{"rendered":"ORGANIZACI\u00d3N: Fundaci\u00f3n LGMD-1D DNAJB6"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

NOMBRE DE LA ORGANIZACI\u00d3N<\/strong>: Fundaci\u00f3n LGMD-1D DNAJB6<\/p>\n\n\n\n

P\u00c1GINA WEB:<\/strong>              www.lgmd1d.org<\/a> <\/p>\n\n\n\n

FACEBOOK:        <\/strong>https:\/\/www.facebook.com\/LGMD.1D<\/a> <\/p>\n\n\n\n

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

LGMD-1D, aunque actualmente somos un registro para LGMD 1A a 1H<\/strong><\/p>\n\n\n\n

\u00bfEXISTE UN REGISTRO DE PACIENTES CON LGMD?    <\/strong><\/p>\n\n\n\n

S\u00ed, se puede acceder en  <\/strong>www.lgmd1d.org<\/a><\/strong><\/p>\n\n\n\n

\u00bfEs su organizaci\u00f3n una\n\u00bfSin \u00e1nimo de lucro? En caso afirmativo, de qu\u00e9 tipo:         <\/strong><\/p>\n\n\n\n

S\u00ed, estamos constituidos como\norganizaci\u00f3n sin \u00e1nimo de lucro 501 (c)(3)<\/p>\n\n\n\n

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

\u00a1La larga historia de nuestra familia con LGMD-ID y 40 a\u00f1os de b\u00fasqueda de una cura! Nos inspir\u00f3 el proyecto GRASP-LGMD patrocinado por la MDA.<\/p>\n\n\n\n

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

Proporcionar un registro internacional para las formas autos\u00f3micas dominantes infrarrepresentadas de LGMD. Recaudamos fondos a trav\u00e9s de eventos locales, Amazon Smile y donaciones en l\u00ednea para sufragar los gastos de viaje de los pacientes que lo necesitan. Esperamos que a trav\u00e9s de la organizaci\u00f3n de nuestra condici\u00f3n dominante particular podamos acelerar la investigaci\u00f3n y una cura.<\/p>\n\n\n\n

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

La Fundaci\u00f3n LGMD-1D DNAJB6 proporciona organizaci\u00f3n, reclutamiento y financiaci\u00f3n para que los pacientes puedan acceder a los centros de investigaci\u00f3n.<\/p>\n\n\n\n

DE QU\u00c9\nORGANIZACI\u00d3N M\u00c1S ORGULLOSA:<\/strong><\/p>\n\n\n\n

Hemos creado un portal web y una comunidad en Facebook para que la gente se conozca y comparta experiencias. Hemos recaudado dinero suficiente para sufragar los gastos de viaje de quienes lo necesitan.<\/p>\n\n\n\n

Para quienes padecen una enfermedad hu\u00e9rfana, ofrecer una comunidad, un registro y una voz a quienes se sienten abandonados.<\/p>\n\n\n\n

\u00bfQU\u00c9 QUIERE QUE EL MUNDO SEPA DE SU ORGANIZACI\u00d3N?<\/strong>?<\/p>\n\n\n\n

Si podemos curar esta enfermedad hu\u00e9rfana, muchas m\u00e1s enfermedades gen\u00e9ticas no relacionadas se beneficiar\u00e1n.\nenfermedades gen\u00e9ticas no relacionadas. Estamos\naqu\u00ed para usted, \u00a1aprov\u00e9chelo!<\/p>\n\n\n\n

\u00bfC\u00d3MO PUEDE LA GENTE PARTICIPAR EN EL APOYO A SU ORGANIZACI\u00d3N?<\/strong><\/p>\n\n\n\n

Consulte nuestro sitio web: www.lgmd1d.org<\/a>  Considere la posibilidad de hacer una donaci\u00f3n en el sitio web para aquellos\nmenos afortunados. Promueva nuestro\nsitio, nuestra misi\u00f3n y dona o compra en Amazon Smile y selecciona la LGMD-1D DNAJB6\ncomo su organizaci\u00f3n ben\u00e9fica preferida.<\/p>\n\n\n\n

\u00bfCU\u00c1L ES LA MEJOR MANERA DE PONERSE EN CONTACTO CON SU ORGANIZACI\u00d3N?<\/strong><\/p>\n\n\n\n

Nuestra informaci\u00f3n de contacto se encuentra en nuestro sitio web www.lgmd1d.org<\/a> o por correo electr\u00f3nico: wslowery.57@lgmd1d.org<\/a><\/p>\n\n\n\n

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

Este es un largo viaje y dentro de cinco a\u00f1os todo esto dar\u00e1 sus frutos. Queremos dar las gracias al personal de investigaci\u00f3n y apoyo de la Cl\u00ednica Neuromuscular de la Universidad de Washington, San Luis, sin el cual esto no ser\u00eda posible. Gracias, William S Lowery, MD<\/p>","protected":false},"excerpt":{"rendered":"

NAME OF ORGANIZATION:         LGMD-1D DNAJB6 Foundation WEBSITE:              www.lgmd1d.org FACEBOOK:        […]<\/p>","protected":false},"author":1,"featured_media":3077,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[102,94,104,95],"tags":[],"class_list":["post-3076","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-lgmd-d1-dnajb6-related","category-organization-interview","category-lgmd1d","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: LGMD-1D DNAJB6 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=\"https:\/\/www.lgmd-info.org\/es\/organization-interview\/2019\/10\/22\/lgmd-1d-foundation\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: LGMD-1D DNAJB6 Foundation - 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