{"id":1985,"date":"2018-06-13T21:54:54","date_gmt":"2018-06-14T02:54:54","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1985"},"modified":"2018-06-13T21:54:54","modified_gmt":"2018-06-14T02:54:54","slug":"organization-the-speak-foundation","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/organization-interview\/2018\/06\/13\/organization-the-speak-foundation\/","title":{"rendered":"ORGANIZZAZIONE: Fondazione Speak"},"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\/06\/The-Speak-Foundation.png\" alt=\"\" class=\"lazyload wp-image-1984\"\/><\/figure>\n\n\n<p><strong>NOME DELL'ORGANIZZAZIONE<\/strong>:         La Fondazione Speak<\/p>\n<p><strong>SITO WEB:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0<a href=\"http:\/\/www.thespeakfoundation.com\" target=\"_blank\" rel=\"noopener noreferrer\">www.thespeakfoundation.com<\/a><\/p>\n<p><strong>FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><a href=\"http:\/\/www.facebook.com\/THESPEAKFOUNDATION\/\" target=\"_blank\" rel=\"noopener noreferrer\">www.facebook.com\/THESPEAKFOUNDATION<\/a><\/p>\n<p>\u00a0<\/p>\n<p><strong>SU QUALE SOTTOTIPO DI LGMD SI CONCENTRA LA VOSTRA ORGANIZZAZIONE:\u00a0 <\/strong><\/p>\n<p>Tutte le forme di malattie neuromuscolari, compresa la LGMD.<\/p>\n<p><strong>La vostra organizzazione \u00e8 una Non-Profit? Se s\u00ec, di che tipo:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Ente di beneficenza pubblico esente da imposte, con sede negli Stati Uniti, 501 (c)(3).  Tutte le donazioni sono deducibili dalle tasse.<\/p>\n<p><strong>COSA HA ISPIRATO LA CREAZIONE DELLA VOSTRA ORGANIZZAZIONE<\/strong>:<\/p>\n<p>Pi\u00f9 di dieci anni fa, nella comunit\u00e0 della distrofia muscolare c'era uno spazio vuoto di bisogni non soddisfatti. Abbiamo iniziato nel 2008 a occuparci di diverse aree. Il nostro nome si basa su un versetto della Bibbia \"Parla per coloro che non hanno voce\". La nostra organizzazione non profit ha dato vita a molti altri movimenti e ad altre organizzazioni non profit.<\/p>\n<p><strong>qual \u00e8 la missione della vostra organizzazione?<\/strong><\/p>\n<p>Migliorare la qualit\u00e0 della vita delle persone affette da disabilit\u00e0 fisica.<\/p>\n<p><strong>QUALI SERVIZI FORNISCE LA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n<p>Assistenza in caso di ostacoli all'occupazione, supporto psicologico\/spirituale, problemi di qualit\u00e0 della vita, promozione del benessere generale dei disabili fisici in tutto il mondo, necessit\u00e0 di attrezzature mediche durevoli e accesso alle cure mediche.<\/p>\n<p><strong>DI COSA \u00c8 PI\u00d9 ORGOGLIOSA LA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n<p>La nostra conferenza annuale sulle cure di sollievo, che ha aiutato oltre 500 persone. Siamo stati la prima organizzazione nazionale per la distrofia muscolare gestita da un paziente.<\/p>\n<p><strong>Cosa volete che il mondo sappia della vostra organizzazione?<\/strong>:<\/p>\n<p>Abbiamo a cuore i vostri bisogni non soddisfatti e conosciamo le vostre lotte. Siamo un'organizzazione composta esclusivamente da volontari che hanno a che fare con le malattie neuromuscolari.<\/p>\n<p><strong>COME SI PU\u00d2 PARTECIPARE AL SOSTEGNO DELLA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n<p>Per prima cosa chiediamo loro di offrirsi come volontari, perch\u00e9 \u00e8 questo il modo in cui le persone aiutano di pi\u00f9.<\/p>\n<p><strong>QUAL \u00c8 IL MODO MIGLIORE PER CONTATTARE LA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n<p>Potete contattare Jessica via e-mail all'indirizzo <a href=\"mailto:jessica@thespeakfoundation.com\">jessica@thespeakfoundation.com<\/a><\/p>\n<p><strong>C'\u00c8 QUALCOS'ALTRO CHE VORREBBE AGGIUNGERE?<\/strong><\/p>\n<p>Il 10\u00b0 anniversario delle nostre conferenze per le persone con disturbi neuromuscolari e i loro cari si terr\u00e0 ad Atlanta, GA, da venerd\u00ec 6 a domenica 8 luglio 2018.   La registrazione \u00e8 gratuita.    Michael Triplett, Ph.D., Presidente, CEO e cofondatore dell'azienda biotecnologica Myonexus Therapeutic si unir\u00e0 a noi sabato mattina per parlare della speranza delle terapie geniche per le LGMD!    Si tratter\u00e0 di una sessione entusiasmante per molti, soprattutto per coloro che sono affetti da LGMD. Non vorrete perdervela! Siamo entusiasti!  E voi?\"<\/p>\n<p>\u00c8 ancora possibile registrarsi per partecipare alla nostra prossima conferenza! La registrazione \u00e8 gratuita. Questa non \u00e8 solo una conferenza per gli abitanti di GA. Le persone vengono da tutto il mondo e anche a livello internazionale!  Potete registrarvi e saperne di pi\u00f9 su\u00a0 <a href=\"http:\/\/thespeakfoundation.com\/conference\/\" target=\"_blank\" rel=\"noopener noreferrer\">http:\/\/thespeakfoundation.com\/conference\/<\/a><\/p>\n<p>\u00a0<\/p>\n<p>\u00a0<\/p>\n<p>\u00a0<\/p>\n<p>\u00a0<\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF ORGANIZATION:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 The Speak Foundation WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0www.thespeakfoundation.com FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1984,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,95],"tags":[],"class_list":["post-1985","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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