{"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\/pl\/organization-interview\/2018\/06\/13\/organization-the-speak-foundation\/","title":{"rendered":"ORGANIZACJA: Fundacja 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>NAZWA ORGANIZACJI<\/strong>:         Fundacja Speak<\/p>\n<p><strong>STRONA INTERNETOWA:<\/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>NA JAKIM PODTYPIE LGMD KONCENTRUJE SI\u0118 TWOJA ORGANIZACJA:\u00a0 <\/strong><\/p>\n<p>Wszystkie formy chor\u00f3b nerwowo-mi\u0119\u015bniowych, w tym LGMD.<\/p>\n<p><strong>Czy Twoja organizacja jest organizacj\u0105 non-profit? Je\u015bli tak, to jakiego typu:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Ameryka\u0144ska organizacja charytatywna 501 (c) (3) zwolniona z podatku.  Wszystkie darowizny mo\u017cna odliczy\u0107 od podatku.<\/p>\n<p><strong>CO ZAINSPIROWA\u0141O POWSTANIE TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n<p>Ponad dziesi\u0119\u0107 lat temu w spo\u0142eczno\u015bci os\u00f3b cierpi\u0105cych na dystrofi\u0119 mi\u0119\u015bniow\u0105 istnia\u0142a pusta przestrze\u0144 niezaspokojonych potrzeb. Zacz\u0119li\u015bmy w 2008 roku, aby zaj\u0105\u0107 si\u0119 r\u00f3\u017cnymi obszarami. Nasza nazwa opiera si\u0119 na wersecie z Biblii \"M\u00f3w w imieniu tych, kt\u00f3rzy nie maj\u0105 g\u0142osu\". Nasza organizacja non-profit da\u0142a pocz\u0105tek wielu innym ruchom i organizacjom non-profit.<\/p>\n<p><strong>jaka jest misja twojej organizacji?<\/strong><\/p>\n<p>Poprawa jako\u015bci \u017cycia os\u00f3b z niepe\u0142nosprawno\u015bci\u0105 fizyczn\u0105.<\/p>\n<p><strong>JAKIE US\u0141UGI \u015aWIADCZY TWOJA ORGANIZACJA:<\/strong><\/p>\n<p>Pomoc w zakresie barier w zatrudnieniu, wsparcie psychologiczne\/duchowe, kwestie jako\u015bci \u017cycia, promowanie og\u00f3lnego dobrobytu os\u00f3b niepe\u0142nosprawnych fizycznie na ca\u0142ym \u015bwiecie, potrzeby w zakresie trwa\u0142ego sprz\u0119tu medycznego i dost\u0119p do opieki medycznej.<\/p>\n<p><strong>Z CZEGO TWOJA ORGANIZACJA JEST NAJBARDZIEJ DUMNA?<\/strong><\/p>\n<p>Nasza coroczna konferencja dotycz\u0105ca opieki zast\u0119pczej, kt\u00f3ra pomog\u0142a ponad 500 osobom. Byli\u015bmy pierwsz\u0105 organizacj\u0105 prowadzon\u0105 przez pacjent\u00f3w zajmuj\u0105c\u0105 si\u0119 dystrofi\u0105 mi\u0119\u015bniow\u0105 w kraju.<\/p>\n<p><strong>Co chcesz, aby \u015bwiat dowiedzia\u0142 si\u0119 o TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n<p>Dbamy o Twoje niezaspokojone potrzeby i znamy Twoje zmagania. Jeste\u015bmy organizacj\u0105 z\u0142o\u017con\u0105 wy\u0142\u0105cznie z wolontariuszy, kt\u00f3rzy r\u00f3wnie\u017c zmagaj\u0105 si\u0119 z chorobami nerwowo-mi\u0119\u015bniowymi.<\/p>\n<p><strong>W JAKI SPOS\u00d3B LUDZIE MOG\u0104 ZAANGA\u017bOWA\u0106 SI\u0118 WE WSPIERANIE ORGANIZACJI:<\/strong><\/p>\n<p>Najpierw poprosiliby\u015bmy ich o wolontariat, poniewa\u017c w ten spos\u00f3b ludzie pomagaj\u0105 najbardziej.<\/p>\n<p><strong>JAKI JEST NAJLEPSZY SPOS\u00d3B KONTAKTU Z ORGANIZACJ\u0104:<\/strong><\/p>\n<p>Z Jessic\u0105 mo\u017cna skontaktowa\u0107 si\u0119 za po\u015brednictwem poczty elektronicznej pod adresem <a href=\"mailto:jessica@thespeakfoundation.com\">jessica@thespeakfoundation.com<\/a><\/p>\n<p><strong>CZY JEST CO\u015a JESZCZE, CO CHCIA\u0141BY\u015a DODA\u0106?<\/strong><\/p>\n<p>10. rocznica naszych konferencji dla os\u00f3b z zaburzeniami nerwowo-mi\u0119\u015bniowymi i ich bliskich odb\u0119dzie si\u0119 w Atlancie w stanie Georgia w dniach od pi\u0105tku 6 lipca do niedzieli 8 lipca 2018 roku.   Rejestracja jest bezp\u0142atna.    Dr Michael Triplett, prezes, dyrektor generalny i wsp\u00f3\u0142za\u0142o\u017cyciel firmy biotechnologicznej Myonexus Therapeutic do\u0142\u0105czy do nas w sobot\u0119 rano, aby opowiedzie\u0107 o nadziei na terapie genowe dla LGMD!    B\u0119dzie to ekscytuj\u0105ca sesja dla wielu os\u00f3b, zw\u0142aszcza tych z LGMD. Nie b\u0119dziesz chcia\u0142 jej przegapi\u0107! Jeste\u015bmy podekscytowani!  A ty?\"<\/p>\n<p>Nadal mo\u017cesz zarejestrowa\u0107 si\u0119 na nasz\u0105 nadchodz\u0105c\u0105 konferencj\u0119! Rejestracja jest BEZP\u0141ATNA. To nie jest tylko konferencja dla ludzi z GA. Ludzie przyje\u017cd\u017caj\u0105 z ca\u0142ego \u015bwiata, a nawet z zagranicy!  Mo\u017cesz zarejestrowa\u0107 si\u0119 i dowiedzie\u0107 si\u0119 wi\u0119cej na stronie\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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