{"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\/pl\/lgmd2a\/2018\/09\/21\/beyond-labels-limitations\/","title":{"rendered":"ORGANIZACJA: Poza etykietami i ograniczeniami"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NAZWA ORGANIZACJI<\/strong>: Poza etykietami i ograniczeniami\u00a0<\/p>\n

STRONA INTERNETOWA:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0www.BeyondLabelsLimitations.com<\/a><\/p>\n

FACEBOOK:\u00a0\u00a0 \u00a0\u00a0<\/strong>https:\/\/www.facebook.com\/groups\/29111827568\/<\/a><\/p>\n

Kana\u0142 YouTube:\u00a0 \u00a0<\/strong>www.youtube.com\/user\/John71377<\/a><\/p>\n

\u00a0<\/strong><\/p>\n

NA JAKIM PODTYPIE LGMD KONCENTRUJE SI\u0118 TWOJA ORGANIZACJA:\u00a0 <\/strong><\/p>\n

LGMD2A \/ kalpainopatia<\/p>\n

JE\u015aLI KONCENTRUJESZ SI\u0118 NA PODTYPIE, CZY ISTNIEJE REJESTR I W JAKI SPOS\u00d3B PACJENCI MOG\u0104 DO NIEGO DO\u0141\u0104CZY\u0106? <\/strong><\/p>\n

Koalicja na rzecz leczenia kalpainy 3<\/a> utrzymuje Globalny rejestr pacjent\u00f3w LGMD2A<\/a> kt\u00f3re s\u0105 dost\u0119pne online.<\/p>\n

CZY TWOJA ORGANIZACJA JEST ORGANIZACJ\u0104 NON-PROFIT?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

Tak, jeste\u015bmy organizacj\u0105 non-profit 501(c)3.<\/p>\n

CO ZAINSPIROWA\u0141O POWSTANIE TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n

Ja, John C. Graybill II, za\u0142o\u017cy\u0142em BL&L z dw\u00f3ch powod\u00f3w. Pierwszym powodem by\u0142o zebranie pieni\u0119dzy na badania. Od 1995 do 2006 roku co roku chodzi\u0142em do mojego neurologa, a on m\u00f3wi\u0142 mi, \u017ce nie ma \u017cadnych nowo\u015bci w zakresie leczenia. Chcia\u0142em to zmieni\u0107. Drugim powodem, dla kt\u00f3rego za\u0142o\u017cy\u0142em BL&L, by\u0142o podniesienie \u015bwiadomo\u015bci poprzez moje filmy. W tamtym czasie nikt nie nagrywa\u0142 swoich post\u0119p\u00f3w w LGMD i nie by\u0142o nikogo, z kim m\u00f3g\u0142bym si\u0119 skontaktowa\u0107. Tworz\u0105c filmy, otworzy\u0142em drzwi dla innych, aby mogli si\u0119 ze mn\u0105 po\u0142\u0105czy\u0107 i nie czuli si\u0119 samotni. Moje filmy s\u0105 dost\u0119pne na YouTube<\/a><\/p>\n

JAKA JEST MISJA ORGANIZACJI:<\/strong><\/p>\n

Wspieranie rygorystycznych bada\u0144 naukowych nad LGMD2A i edukowanie innych na temat przebiegu choroby, zgodnie z moim osobistym do\u015bwiadczeniem.<\/p>\n

JAKIE US\u0141UGI \u015aWIADCZY TWOJA ORGANIZACJA:<\/strong><\/p>\n

System wsparcia online za po\u015brednictwem Facebooka. Grupa, kt\u00f3r\u0105 za\u0142o\u017cy\u0142em to \"Dystrofia mi\u0119\u015bniowa obr\u0119czy ko\u0144czyny: Poza etykietami i ograniczeniami<\/a>\" i obecnie liczy ponad 3000 cz\u0142onk\u00f3w z ca\u0142ego \u015bwiata. Grupa jest otwarta dla wszystkich os\u00f3b z dowoln\u0105 postaci\u0105 LGMD i na dowolnym etapie procesu chorobowego.<\/p>\n

Z CZEGO TWOJA ORGANIZACJA JEST NAJBARDZIEJ DUMNA?<\/strong><\/p>\n

Wk\u0142ad $50,000 w badania naukowe.<\/p>\n

Co chcesz, aby \u015bwiat dowiedzia\u0142 si\u0119 o TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n

\u017be je\u015bli chcesz co\u015b zmieni\u0107, mo\u017cesz to zrobi\u0107, robi\u0105c jeden krok na raz.<\/p>\n

W JAKI SPOS\u00d3B LUDZIE MOG\u0104 ZAANGA\u017bOWA\u0106 SI\u0118 WE WSPIERANIE ORGANIZACJI:<\/strong><\/p>\n

Przeka\u017c darowizn\u0119 i\/lub do\u0142\u0105cz do grupy LGMD na Facebooku. Darowizny mo\u017cna przekazywa\u0107 online<\/a>.<\/p>\n

JAKI JEST NAJLEPSZY SPOS\u00d3B KONTAKTU Z ORGANIZACJ\u0104:<\/strong><\/p>\n

Skontaktuj si\u0119 z Johnem C. Graybillem II, wysy\u0142aj\u0105c wiadomo\u015b\u0107 e-mail na adres jcg713@aol.com.<\/p>\n

CZY JEST CO\u015a JESZCZE, CO CHCIA\u0141BY\u015a DODA\u0106?<\/strong><\/p>\n

Lekarstwo ju\u017c istnieje.<\/p>\n

\u00a0<\/p>","protected":false},"excerpt":{"rendered":"

NAME OF ORGANIZATION:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0Beyond Labels & Limitations\u00a0 WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 […]<\/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":"\nORGANIZATION: Beyond Labels & Limitations - 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=\"http:\/\/www.lgmd-info.org\/pl\/lgmd2a\/2018\/09\/21\/beyond-labels-limitations\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Beyond Labels & Limitations - 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