{"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\/es\/lgmd2d\/2020\/10\/26\/organization-stichting-spierkracht\/","title":{"rendered":"ORGANIZACI\u00d3N: 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>ORGANIZACI\u00d3N LGMD:\u00a0 \u00a0\u00a0\u00a0 <\/strong>Fundaci\u00f3n Spierkracht<\/p>\n<p><strong>P\u00c1GINA 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>EN QU\u00c9 SUBTIPO DE LGMD SE CENTRA SU ORGANIZACI\u00d3N:\u00a0 <\/strong><\/p>\n<p>Nos centramos en LGMD2D \/ R3 Alpha Sarcoglycan-related<\/p>\n<p><strong>SI SE CENTRA EN UN SUBTIPO, \u00bfEXISTE UN REGISTRO Y C\u00d3MO PUEDEN INSCRIBIRSE LOS PACIENTES? <\/strong><\/p>\n<p>Aconsejamos a todos los pacientes de LGMD2D que se registren: https:\/\/lgmd2d.org\/patient-resources\/register\/. Es muy importante tener un diagn\u00f3stico confirmado por ADN. Si su mutaci\u00f3n no se confirma, puede afectar a su tratamiento m\u00e9dico.<\/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, somos una organizaci\u00f3n sin \u00e1nimo de lucro con sede en los Pa\u00edses Bajos.  S\u00f3lo contamos con voluntarios y no tenemos gastos generales.<\/p>\n<p><strong>QU\u00c9 INSPIR\u00d3 LA CREACI\u00d3N DE SU ORGANIZACI\u00d3N<\/strong>:<\/p>\n<p>Recibimos la fundaci\u00f3n de SpierKracht como regalo de Navidad. A nuestro hijo le diagnosticaron LGMD2d en 2006. Como perdimos a nuestra hija mayor por una cardiopat\u00eda, est\u00e1bamos decididos a hacer todo lo posible por nuestros hijos y viajamos muchos a\u00f1os al mejor hospital infantil. Amigos recaudaron dinero con maratones, etc\u00e9tera, para cubrir los gastos y organizamos banquetes ben\u00e9ficos.<\/p>\n<p><strong>CU\u00c1L ES LA MISI\u00d3N DE SU ORGANIZACI\u00d3N:<\/strong><\/p>\n<p>Todos los pacientes merecen la mejor atenci\u00f3n, por lo que hemos decidido llegar a todos los pacientes y sus familias diagnosticados de LGMD2D en los Pa\u00edses Bajos. Nos centramos principalmente en la concienciaci\u00f3n, la educaci\u00f3n, la resoluci\u00f3n de problemas y todo lo que necesita saber antes de inscribirse en un ensayo. Como los Pa\u00edses Bajos son un pa\u00eds muy peque\u00f1o y la LGMD2D es realmente rara, llegamos a todo el mundo. Recientemente hemos hecho un v\u00eddeo sobre tres personas que viven con LGMD en tres continentes diferentes.<\/p>\n<p><strong>QU\u00c9 SERVICIOS PRESTA SU ORGANIZACI\u00d3N:<\/strong><\/p>\n<p>Informaci\u00f3n fiable para los familiares del paciente con LGMD2D sobre todos los temas adecuados en las diferentes etapas de la vida de los pacientes. Tambi\u00e9n contamos con un experto cualificado en pacientes y trabajamos en el diagn\u00f3stico precoz y el asesoramiento de pacientes no s\u00f3lo para los pacientes holandeses, sino en todo el mundo.<\/p>\n<p><strong>DE QU\u00c9 SE SIENTE M\u00c1S ORGULLOSA SU ORGANIZACI\u00d3N<\/strong><\/p>\n<p>Estamos muy orgullosos de todas las personas que conocemos, las familias que viven con el diagn\u00f3stico LGMD2D, pero tambi\u00e9n estamos muy orgullosos de todas las personas que dedican su vida a encontrar una cura y a proporcionar los mejores cuidados a los pacientes. El diagn\u00f3stico correcto abri\u00f3 una puerta a un ensayo gen\u00e9tico y estamos deseando que llegue un tratamiento. Hasta entonces, haremos todo lo posible por orientar a las familias de forma pr\u00e1ctica, pero tambi\u00e9n por allanar el camino para proporcionar un tratamiento y un acceso global.<\/p>\n<p><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre SU ORGANIZACI\u00d3N?<\/strong>:<\/p>\n<p>Obtener el diagn\u00f3stico LGMD2D no es el fin del mundo. Es un viaje lleno de retos, pero con \u00e9l se crea una gran comunidad LGMD2D. La enfermedad se manifiesta de forma diferente en cada paciente, pero tenemos mucho en com\u00fan y podemos hacer todo juntos. No dejes que la enfermedad te defina o te limite. T\u00fa eres quien eres y puedes perseguir tus sue\u00f1os.<\/p>\n<p><strong>C\u00d3MO PUEDE PARTICIPAR LA GENTE EN EL APOYO A SU ORGANIZACI\u00d3N:<\/strong><\/p>\n<p>Siempre estamos buscando amigos que quieran organizar una actividad para recaudar fondos. Debido a la pandemia,<\/p>\n<p>La mayor\u00eda de las familias est\u00e1n aisladas y no pudimos organizar nuestro banquete anual en 2020 debido al coronavirus. Cualquier donaci\u00f3n, grande o peque\u00f1a, se destinar\u00e1 a ayudar a las familias con LGMD2D a financiar la atenci\u00f3n m\u00e9dica o, por ejemplo, las adaptaciones de sus viviendas.<\/p>\n<p><strong>CU\u00c1L ES LA MEJOR MANERA DE PONERSE EN CONTACTO CON SU ORGANIZACI\u00d3N:<\/strong><\/p>\n<p>Env\u00ede un correo electr\u00f3nico a nuestro experto en pacientes a stichtingspierkracht@ziggo.nl, o rellene nuestro formulario de contacto en nuestro sitio web: http:\/\/stichtingspierkracht.com\/<\/p>\n<p><strong>\u00bfLE GUSTAR\u00cdA A\u00d1ADIR ALGO M\u00c1S?<\/strong><\/p>\n<p>Hace 10 a\u00f1os no hab\u00eda ning\u00fan tratamiento disponible y los m\u00e9dicos se limitaban a seguir la evoluci\u00f3n de la enfermedad. El ensayo gen\u00e9tico del Prof. Jerry Mendell en 2015 para LGMD2D tuvo resultados positivos y ahora tambi\u00e9n hay investigaciones prometedoras para LGMD2 A, B, C, E y I. Estoy deseando que llegue un momento, en alg\u00fan lugar del futuro cercano, en el que el tratamiento gen\u00e9tico est\u00e9 disponible para todo el mundo, y qui\u00e9n sabe d\u00f3nde estar\u00e1 el campo neuromuscular dentro de otros 10 a\u00f1os. Pero en 2020 todav\u00eda hay m\u00e9dicos que dan un diagn\u00f3stico a los pacientes pero no les cuentan los avances de la investigaci\u00f3n, incluida la terapia g\u00e9nica. Tu tratamiento depende de ti, convi\u00e9rtete en el experto y con\u00e9ctate con un miembro del Consejo Asesor de la Comunidad para cualquier 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\/es\/lgmd2d\/2020\/10\/26\/organization-stichting-spierkracht\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Stichting Spierkracht - 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