{"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\/it\/lgmd2a\/2018\/09\/21\/beyond-labels-limitations\/","title":{"rendered":"ORGANIZZAZIONE: oltre le etichette e le limitazioni"},"content":{"rendered":"<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27960%27%20height%3D%27720%27%20viewBox%3D%270%200%20960%20720%27%3E%3Crect%20width%3D%27960%27%20height%3D%27720%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/09\/Beyond-Labels.png\" alt=\"\" class=\"lazyload wp-image-2260\"\/><\/figure>\n\n\n<p><strong>NOME DELL'ORGANIZZAZIONE<\/strong>:          Oltre le etichette e le limitazioni\u00a0<\/p>\n<p><strong>SITO WEB:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0<a href=\"http:\/\/www.BeyondLabelsLimitations.com\">www.BeyondLabelsLimitations.com<\/a><\/p>\n<p><strong>FACEBOOK:\u00a0\u00a0 \u00a0\u00a0<\/strong><a href=\"https:\/\/www.facebook.com\/groups\/29111827568\/\">https:\/\/www.facebook.com\/groups\/29111827568\/<\/a><\/p>\n<p><strong>Canale YouTube:\u00a0 \u00a0<\/strong><a href=\"https:\/\/www.youtube.com\/user\/John71377\">www.youtube.com\/user\/John71377<\/a><\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>SU QUALE SOTTOTIPO DI LGMD SI CONCENTRA LA VOSTRA ORGANIZZAZIONE:\u00a0 <\/strong><\/p>\n<p>LGMD2A \/ Calpainopatia<\/p>\n<p><strong>SE CI SI CONCENTRA SU UN SOTTOTIPO, ESISTE UN REGISTRO E COME POSSONO ISCRIVERSI I PAZIENTI? <\/strong><\/p>\n<p><a href=\"http:\/\/www.curecalpain3.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">Coalizione per la cura della calpaina 3<\/a> mantiene il <a href=\"http:\/\/www.lgmd2a.org\" target=\"_blank\" rel=\"noopener noreferrer\">Registro globale dei pazienti LGMD2A<\/a> a cui si pu\u00f2 accedere online.<\/p>\n<p><strong>LA VOSTRA ORGANIZZAZIONE \u00c8 UNA NO-PROFIT:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>S\u00ec, siamo un'organizzazione 501(c)3 senza scopo di lucro.<\/p>\n<p><strong>COSA HA ISPIRATO LA CREAZIONE DELLA VOSTRA ORGANIZZAZIONE<\/strong>:<\/p>\n<p>Io, John C. Graybill II, ho fondato la BL&amp;L per due motivi. Il primo motivo era raccogliere fondi per la ricerca. Dal 1995 al 2006 ogni anno andavo dal mio neurologo e lui mi diceva che non c'erano novit\u00e0 in termini di trattamento. Volevo cambiare questa situazione. Il secondo motivo per cui ho fondato BL&amp;L \u00e8 stato quello di sensibilizzare l'opinione pubblica attraverso i miei video. All'epoca non c'era nessuno che registrasse i progressi della LGMD e non c'era nessuno con cui potessi entrare in contatto. Realizzando i video ho aperto la porta ad altri per metterli in contatto con me e non sentirsi soli.  I miei video sono disponibili su <a href=\"https:\/\/www.youtube.com\/user\/John71377\" target=\"_blank\" rel=\"noopener noreferrer\">YouTube<\/a><\/p>\n<p><strong>QUAL \u00c8 LA MISSIONE DELLA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n<p>Sostenere una ricerca scientifica rigorosa per la LGMD2A ed educare gli altri sul decorso della malattia, come raccontato dalla mia esperienza personale.<\/p>\n<p><strong>QUALI SERVIZI FORNISCE LA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n<p>Sistema di supporto online tra pari attraverso Facebook.  Il gruppo che ho creato \u00e8 \"<a href=\"https:\/\/www.facebook.com\/groups\/29111827568\/\" target=\"_blank\" rel=\"noopener noreferrer\">Distrofia muscolare della cintura degli arti:  Oltre le etichette e le limitazioni<\/a>\" e attualmente conta oltre 3.000 membri da tutto il mondo.  Il gruppo \u00e8 aperto a chiunque sia affetto da qualsiasi forma di LGMD e in qualsiasi fase del processo patologico.<\/p>\n<p><strong>DI COSA \u00c8 PI\u00d9 ORGOGLIOSA LA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n<p>Contributo di $50.000 per la ricerca.<\/p>\n<p><strong>Cosa volete che il mondo sappia della vostra organizzazione?<\/strong>:<\/p>\n<p>Che se volete fare la differenza potete farla facendo un passo alla volta.<\/p>\n<p><strong>COME SI PU\u00d2 PARTECIPARE AL SOSTEGNO DELLA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n<p>Donazioni e\/o unisciti al gruppo Facebook della LGMD.  Le donazioni possono essere effettuate <a href=\"http:\/\/beyondlabelslimitations.com\/donations\/\" target=\"_blank\" rel=\"noopener noreferrer\">online<\/a>.<\/p>\n<p><strong>QUAL \u00c8 IL MODO MIGLIORE PER CONTATTARE LA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n<p>Contattare John C. Graybill II via e-mail all'indirizzo jcg713@aol.com.<\/p>\n<p><strong>C'\u00c8 QUALCOS'ALTRO CHE VORREBBE AGGIUNGERE?<\/strong><\/p>\n<p>La cura \u00e8 l\u00e0 fuori.<\/p>\n<p>\u00a0<\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF ORGANIZATION:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0Beyond Labels &amp; Limitations\u00a0 WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 [&hellip;]<\/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":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>ORGANIZATION: Beyond Labels &amp; 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