{"id":3732,"date":"2020-10-26T21:27:47","date_gmt":"2020-10-27T02:27:47","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3732"},"modified":"2024-02-09T14:24:27","modified_gmt":"2024-02-09T14:24:27","slug":"organization-stichting-spierkracht","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/lgmd2d\/2020\/10\/26\/organization-stichting-spierkracht\/","title":{"rendered":"ORGANIZA\u00c7\u00c3O: Stichting Spierkracht"},"content":{"rendered":"<div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:calc( 1400px + 0px );margin-left: calc(-0px \/ 2 );margin-right: calc(-0px \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:0px;--awb-margin-bottom-large:0px;--awb-spacing-left-large:0px;--awb-width-medium:100%;--awb-spacing-right-medium:0px;--awb-spacing-left-medium:0px;--awb-width-small:100%;--awb-spacing-right-small:0px;--awb-spacing-left-small:0px;\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-1\"><p><a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2020\/10\/Stitchting.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-3733 aligncenter\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27225%27%20viewBox%3D%270%200%20300%20225%27%3E%3Crect%20width%3D%27300%27%20height%3D%27225%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2020\/10\/Stitchting-300x225.png\" alt=\"\" width=\"300\" height=\"225\" \/><\/a><\/p>\n<p><strong>ORGANIZA\u00c7\u00c3O LGMD:\u00a0 \u00a0\u00a0\u00a0 <\/strong>Funda\u00e7\u00e3o Spierkracht<\/p>\n<p><strong>S\u00cdTIO WEB:<\/strong>\u00a0 \u00a0<a href=\"http:\/\/www.stichtingSpierKracht.com\">www.stichtingSpierKracht.com<\/a><\/p>\n<p><strong>FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><a href=\"https:\/\/www.facebook.com\/stichtingspierkracht.nl\">https:\/\/www.facebook.com\/stichtingspierkracht.nl<\/a><\/p>\n<p><strong>INSTAGRAM:\u00a0\u00a0\u00a0\u00a0 <\/strong> <a href=\"https:\/\/www.instagram.com\/stichting_spierkracht\">https:\/\/www.instagram.com\/stichting_spierkracht<\/a><\/p>\n<p><strong>EM QUE SUBTIPO DE LGMD SE CONCENTRA A SUA ORGANIZA\u00c7\u00c3O:\u00a0 <\/strong><\/p>\n<p>Concentramo-nos em LGMD2D \/ R3 Alpha Sarcoglycan-related<\/p>\n<p><strong>SE NOS CONCENTRARMOS NUM SUBTIPO, EXISTE UM REGISTO E COMO PODEM OS DOENTES ADERIR? <\/strong><\/p>\n<p>Aconselhamos todos os pacientes LGMD2D a registarem-se: https:\/\/lgmd2d.org\/patient-resources\/register\/. \u00c9 muito importante ter um diagn\u00f3stico confirmado por ADN. Se a sua muta\u00e7\u00e3o n\u00e3o for confirmada, isso pode afetar o seu tratamento m\u00e9dico.<\/p>\n<p><strong>A sua organiza\u00e7\u00e3o \u00e9 uma organiza\u00e7\u00e3o sem fins lucrativos? Em caso afirmativo, de que tipo:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Sim, somos uma organiza\u00e7\u00e3o sem fins lucrativos sediada nos Pa\u00edses Baixos.  S\u00f3 temos volunt\u00e1rios e n\u00e3o temos despesas gerais.<\/p>\n<p><strong>O QUE INSPIROU A CRIA\u00c7\u00c3O DA SUA ORGANIZA\u00c7\u00c3O<\/strong>:<\/p>\n<p>Recebemos a funda\u00e7\u00e3o da SpierKracht como prenda de Natal. O nosso filho foi diagnosticado com LGMD2d em 2006. Como perdemos a nossa filha mais velha devido a uma doen\u00e7a card\u00edaca, est\u00e1vamos determinados a fazer tudo pelos nossos filhos e viaj\u00e1mos durante muitos anos para o melhor hospital pedi\u00e1trico. Os amigos angariaram fundos com maratonas, etc., para cobrir os custos e organiz\u00e1mos banquetes de benefic\u00eancia.<\/p>\n<p><strong>QUAL \u00c9 A MISS\u00c3O DA SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n<p>Todos os doentes merecem os melhores cuidados, por isso decidimos chegar a todos os doentes e \u00e0s suas fam\u00edlias diagnosticados com LGMD2D nos Pa\u00edses Baixos. Concentramo-nos principalmente na sensibiliza\u00e7\u00e3o, educa\u00e7\u00e3o, resolu\u00e7\u00e3o de problemas e em tudo o que \u00e9 necess\u00e1rio saber antes de se inscrever num ensaio. Uma vez que os Pa\u00edses Baixos s\u00e3o um pa\u00eds muito pequeno e a LGMD2D \u00e9 realmente rara, estamos a trabalhar a n\u00edvel global. Recentemente, fizemos um v\u00eddeo sobre tr\u00eas pessoas que vivem com LGMD em tr\u00eas continentes diferentes.<\/p>\n<p><strong>QUE SERVI\u00c7OS PRESTA A SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n<p>Informa\u00e7\u00e3o fi\u00e1vel para os familiares mais pr\u00f3ximos do doente com LGMD2D sobre todos os assuntos adequados nas diferentes fases da vida do doente. Temos tamb\u00e9m um perito qualificado em doentes e trabalhamos no diagn\u00f3stico precoce e no aconselhamento de doentes, n\u00e3o s\u00f3 para os doentes holandeses, mas tamb\u00e9m a n\u00edvel mundial.<\/p>\n<p><strong>DE QUE \u00c9 QUE A SUA ORGANIZA\u00c7\u00c3O MAIS SE ORGULHA:<\/strong><\/p>\n<p>Estamos muito orgulhosos de todas as pessoas que conhecemos, das fam\u00edlias que vivem com o diagn\u00f3stico LGMD2D, mas tamb\u00e9m estamos muito orgulhosos de todas as pessoas que dedicam a sua vida a encontrar uma cura e a prestar os melhores cuidados aos doentes. O diagn\u00f3stico correto abriu uma porta para um ensaio gen\u00e9tico e estamos ansiosos por um tratamento. At\u00e9 l\u00e1, faremos tudo para orientar as fam\u00edlias de forma pr\u00e1tica, mas tamb\u00e9m para preparar o caminho para a disponibiliza\u00e7\u00e3o de um tratamento e de um acesso global.<\/p>\n<p><strong>O que quer que o mundo saiba sobre a SUA ORGANIZA\u00c7\u00c3O<\/strong>:<\/p>\n<p>Receber o diagn\u00f3stico LGMD2D n\u00e3o \u00e9 o fim do mundo. \u00c9 uma jornada com desafios, mas com ela se consegue uma grande comunidade LGMD2D. A doen\u00e7a manifesta-se de forma diferente em cada doente, mas temos muito em comum e podemos fazer tudo juntos. N\u00e3o deixe que a doen\u00e7a o defina ou limite. \u00c9 quem \u00e9 e continua a perseguir os seus sonhos.<\/p>\n<p><strong>COMO \u00c9 QUE AS PESSOAS SE PODEM ENVOLVER NO APOIO \u00c0 SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n<p>Estamos sempre \u00e0 procura de amigos que queiram organizar uma atividade de angaria\u00e7\u00e3o de fundos. Devido \u00e0 pandemia,<\/p>\n<p>a maioria das fam\u00edlias est\u00e1 em isolamento e n\u00e3o foi poss\u00edvel organizar o nosso banquete anual em 2020 devido ao coronav\u00edrus. Qualquer donativo, grande ou pequeno, ser\u00e1 utilizado para ajudar as fam\u00edlias com LGMD2D a financiar cuidados m\u00e9dicos ou, por exemplo, adapta\u00e7\u00f5es nas suas casas.<\/p>\n<p><strong>QUAL \u00c9 A MELHOR FORMA DE CONTACTAR A SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n<p>Envie um e-mail ao nosso especialista em doentes para stichtingspierkracht@ziggo.nl ou preencha o nosso formul\u00e1rio de contacto no nosso s\u00edtio Web: http:\/\/stichtingspierkracht.com\/<\/p>\n<p><strong>H\u00c1 MAIS ALGUMA COISA QUE GOSTARIA DE ACRESCENTAR?<\/strong><\/p>\n<p>H\u00e1 10 anos, n\u00e3o havia tratamento dispon\u00edvel e os m\u00e9dicos limitavam-se a acompanhar a evolu\u00e7\u00e3o da doen\u00e7a. Jerry Mendell, em 2015, para a LGMD2D teve resultados positivos e agora h\u00e1 tamb\u00e9m investiga\u00e7\u00e3o promissora para a LGMD2 A, B, C, E e I. Aguardo com expetativa que, algures num futuro pr\u00f3ximo, o tratamento gen\u00e9tico seja disponibilizado a todos e quem sabe onde estar\u00e1 o campo neuromuscular daqui a 10 anos. Mas em 2020 ainda h\u00e1 m\u00e9dicos que d\u00e3o um diagn\u00f3stico aos doentes mas n\u00e3o lhes dizem que a investiga\u00e7\u00e3o est\u00e1 a avan\u00e7ar, incluindo a terapia gen\u00e9tica. O seu tratamento tem tudo a ver consigo, torne-se o especialista e contacte um membro do Conselho Consultivo Comunit\u00e1rio para qualquer tipo de LGMD.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":4499,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,28,95],"tags":[],"class_list":["post-3732","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2d","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>ORGANIZATION: Stichting Spierkracht - 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\/lgmd2d\/2020\/10\/26\/organization-stichting-spierkracht\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Stichting Spierkracht - 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