{"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\/pt\/organization-interview\/2019\/10\/22\/lgmd-1d-foundation\/","title":{"rendered":"ORGANIZA\u00c7\u00c3O: Funda\u00e7\u00e3o LGMD-1D DNAJB6"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

NOME DA ORGANIZA\u00c7\u00c3O<\/strong>: Funda\u00e7\u00e3o LGMD-1D DNAJB6<\/p>\n\n\n\n

S\u00cdTIO 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

EM QUE SUBTIPO DE LGMD SE CONCENTRA A SUA ORGANIZA\u00c7\u00c3O:   <\/strong><\/p>\n\n\n\n

LGMD-1D, embora atualmente sejamos um registo para LGMD 1A a 1H<\/strong><\/p>\n\n\n\n

EXISTE UM REGISTO DE DOENTES COM LGMD?    <\/strong><\/p>\n\n\n\n

Sim, pode ser acedido em  <\/strong>www.lgmd1d.org<\/a><\/strong><\/p>\n\n\n\n

A sua organiza\u00e7\u00e3o \u00e9 uma\nSem fins lucrativos? Em caso afirmativo, de que tipo:         <\/strong><\/p>\n\n\n\n

Sim, estamos estabelecidos como\numa organiza\u00e7\u00e3o sem fins lucrativos 501 (c)(3)<\/p>\n\n\n\n

O QUE INSPIROU A\nCRIA\u00c7\u00c3O DA VOSSA ORGANIZA\u00c7\u00c3O<\/strong>:<\/p>\n\n\n\n

A longa hist\u00f3ria da nossa fam\u00edlia com a LGMD-ID e os 40 anos de procura de uma cura! Fomos inspirados pelo projeto GRASP-LGMD patrocinado pela MDA.<\/p>\n\n\n\n

QUAL \u00c9 A MISS\u00c3O DA SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n\n\n\n

Fornecer um registo internacional para formas autoss\u00f3micas dominantes sub-representadas de LGMDs. Angariamos fundos atrav\u00e9s de eventos locais, do Amazon Smile e de donativos online para custear as despesas de desloca\u00e7\u00e3o dos doentes necessitados. Esperamos que, atrav\u00e9s da organiza\u00e7\u00e3o da nossa condi\u00e7\u00e3o dominante espec\u00edfica, possamos acelerar a investiga\u00e7\u00e3o e a cura.<\/p>\n\n\n\n

QUE SERVI\u00c7OS\nA SUA ORGANIZA\u00c7\u00c3O PRESTA:<\/strong><\/p>\n\n\n\n

A LGMD-1D DNAJB6 Foundation fornece organiza\u00e7\u00e3o, recrutamento e financiamento para que os doentes possam aceder a centros de investiga\u00e7\u00e3o.<\/p>\n\n\n\n

DE QUE \u00c9 QUE A SUA\nORGANIZA\u00c7\u00c3O DE QUE MAIS SE ORGULHA:<\/strong><\/p>\n\n\n\n

Cri\u00e1mos um portal na Internet e uma comunidade no Facebook para as pessoas se encontrarem e partilharem experi\u00eancias. Angari\u00e1mos dinheiro suficiente para compensar significativamente as despesas de viagem dos que precisam.<\/p>\n\n\n\n

Para as pessoas com uma doen\u00e7a \u00f3rf\u00e3, proporcionando uma comunidade, um registo e uma voz para aqueles que se sentem deixados para tr\u00e1s.<\/p>\n\n\n\n

O QUE QUER QUE O MUNDO SAIBA SOBRE A SUA ORGANIZA\u00c7\u00c3O<\/strong>?<\/p>\n\n\n\n

Se conseguirmos curar esta doen\u00e7a \u00f3rf\u00e3, muitas outras doen\u00e7as gen\u00e9ticas n\u00e3o relacionadas\ndoen\u00e7as gen\u00e9ticas n\u00e3o relacionadas beneficiar\u00e3o. N\u00f3s estamos\naqui para si, por favor aproveite!<\/p>\n\n\n\n

COMO \u00c9 QUE AS PESSOAS SE PODEM ENVOLVER NO APOIO \u00c0 VOSSA ORGANIZA\u00c7\u00c3O?<\/strong><\/p>\n\n\n\n

Consulte o nosso s\u00edtio Web: www.lgmd1d.org<\/a>  Considere um donativo no s\u00edtio Web para aqueles\nque s\u00e3o menos afortunados. Promova o nosso\nsite, a nossa miss\u00e3o e fa\u00e7a um donativo ou compre no Amazon Smile e selecione a Funda\u00e7\u00e3o LGMD-1D DNAJB6\ncomo sua institui\u00e7\u00e3o de caridade preferida.<\/p>\n\n\n\n

QUAL \u00c9 A MELHOR FORMA DE CONTACTAR A VOSSA ORGANIZA\u00c7\u00c3O?<\/strong><\/p>\n\n\n\n

As nossas informa\u00e7\u00f5es de contacto encontram-se no nosso s\u00edtio Web www.lgmd1d.org<\/a> ou por correio eletr\u00f3nico: wslowery.57@lgmd1d.org<\/a><\/p>\n\n\n\n

H\u00c1 MAIS ALGUMA COISA QUE GOSTARIA DE ACRESCENTAR?<\/strong><\/p>\n\n\n\n

Esta \u00e9 uma longa viagem e, daqui a cinco anos, tudo isto ser\u00e1 compensado. Gostar\u00edamos de agradecer \u00e0 equipa de investiga\u00e7\u00e3o e apoio da Neuromuscular Clinic da Washington University St Louis, sem a qual isto n\u00e3o seria poss\u00edvel. Obrigado, 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\/pt\/organization-interview\/2019\/10\/22\/lgmd-1d-foundation\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: LGMD-1D DNAJB6 Foundation - 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