{"id":3076,"date":"2019-10-22T10:36:44","date_gmt":"2019-10-22T15:36:44","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3076"},"modified":"2019-10-22T10:36:44","modified_gmt":"2019-10-22T15:36:44","slug":"lgmd-1d-foundation","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/organization-interview\/2019\/10\/22\/lgmd-1d-foundation\/","title":{"rendered":"ORGANIZACJA: Fundacja LGMD-1D DNAJB6"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

NAZWA ORGANIZACJI<\/strong>: LGMD-1D DNAJB6 Foundation<\/p>\n\n\n\n

STRONA INTERNETOWA:<\/strong>              www.lgmd1d.org<\/a> <\/p>\n\n\n\n

FACEBOOK:        <\/strong>https:\/\/www.facebook.com\/LGMD.1D<\/a> <\/p>\n\n\n\n

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

LGMD-1D, chocia\u017c obecnie prowadzimy rejestr dla LGMD 1A do 1H<\/strong><\/p>\n\n\n\n

CZY ISTNIEJE REJESTR PACJENT\u00d3W Z LGMD?    <\/strong><\/p>\n\n\n\n

Tak, mo\u017cna uzyska\u0107 do niego dost\u0119p pod adresem  <\/strong>www.lgmd1d.org<\/a><\/strong><\/p>\n\n\n\n

Czy Twoja organizacja jest\nNon-Profit? Je\u015bli tak, to jakiego typu:         <\/strong><\/p>\n\n\n\n

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

CO ZAINSPIROWA\u0141O\nDO STWORZENIA ORGANIZACJI<\/strong>:<\/p>\n\n\n\n

D\u0142uga historia naszej rodziny z LGMD-ID i 40-letnia pogo\u0144 za lekarstwem! Zainspirowa\u0142 nas projekt GRASP-LGMD sponsorowany przez MDA.<\/p>\n\n\n\n

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

Zapewnienie mi\u0119dzynarodowego rejestru dla niedostatecznie reprezentowanych autosomalnych dominuj\u0105cych form LGMD. Zbieramy fundusze poprzez lokalne wydarzenia, Amazon Smile i darowizny online, aby pokry\u0107 koszty podr\u00f3\u017cy dla potrzebuj\u0105cych pacjent\u00f3w. Mamy nadziej\u0119, \u017ce dzi\u0119ki zorganizowaniu naszej szczeg\u00f3lnej dominuj\u0105cej choroby uda nam si\u0119 przyspieszy\u0107 badania i znale\u017a\u0107 lekarstwo.<\/p>\n\n\n\n

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

Fundacja LGMD-1D DNAJB6 zapewnia organizacj\u0119, rekrutacj\u0119 i finansowanie, dzi\u0119ki czemu pacjenci maj\u0105 dost\u0119p do o\u015brodk\u00f3w badawczych.<\/p>\n\n\n\n

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

Udost\u0119pnili\u015bmy portal internetowy i spo\u0142eczno\u015b\u0107 na Facebooku, aby ludzie mogli si\u0119 spotyka\u0107 i dzieli\u0107 do\u015bwiadczeniami. Zebrali\u015bmy wystarczaj\u0105co du\u017co pieni\u0119dzy, aby w znacznym stopniu zr\u00f3wnowa\u017cy\u0107 koszty podr\u00f3\u017cy dla potrzebuj\u0105cych.<\/p>\n\n\n\n

Dla os\u00f3b z chorob\u0105 sieroc\u0105, zapewniaj\u0105c spo\u0142eczno\u015b\u0107, rejestr i g\u0142os dla tych, kt\u00f3rzy czuj\u0105 si\u0119 pomini\u0119ci.<\/p>\n\n\n\n

CO CHCESZ, ABY \u015aWIAT DOWIEDZIA\u0141 SI\u0118 O TWOJEJ ORGANIZACJI?<\/strong>?<\/p>\n\n\n\n

Je\u015bli uda nam si\u0119 wyleczy\u0107 t\u0119 chorob\u0119 sieroc\u0105, skorzysta na tym wiele innych niepowi\u0105zanych chor\u00f3b genetycznych.\nchor\u00f3b genetycznych odniesie korzy\u015bci. Jeste\u015bmy\ntu dla Ciebie, skorzystaj z tego!<\/p>\n\n\n\n

JAK LUDZIE MOG\u0104 ZAANGA\u017bOWA\u0106 SI\u0118 WE WSPIERANIE ORGANIZACJI?<\/strong><\/p>\n\n\n\n

Wi\u0119cej informacji mo\u017cna znale\u017a\u0107 na naszej stronie internetowej: www.lgmd1d.org<\/a>  Rozwa\u017c darowizn\u0119 na stronie internetowej dla tych\nkt\u00f3rzy maj\u0105 mniej szcz\u0119\u015bcia. Promuj nasz\u0105\nstron\u0119, nasz\u0105 misj\u0119 i przeka\u017c darowizn\u0119 lub zr\u00f3b zakupy w Amazon Smile i wybierz Fundacj\u0119 LGMD-1D DNAJB6\njako preferowan\u0105 organizacj\u0119 charytatywn\u0105.<\/p>\n\n\n\n

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

Nasze dane kontaktowe znajduj\u0105 si\u0119 na naszej stronie internetowej www.lgmd1d.org<\/a> lub e-mail: wslowery.57@lgmd1d.org<\/a><\/p>\n\n\n\n

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

To d\u0142uga podr\u00f3\u017c i za pi\u0119\u0107 lat wszystko si\u0119 op\u0142aci. Chcieliby\u015bmy podzi\u0119kowa\u0107 personelowi badawczemu i pomocniczemu w Klinice Nerwowo-Mi\u0119\u015bniowej na Uniwersytecie Waszyngtona w St Louis, bez kt\u00f3rego nie by\u0142oby to mo\u017cliwe. Dzi\u0119kujemy, William S Lowery, MD<\/p>","protected":false},"excerpt":{"rendered":"

NAME OF ORGANIZATION:         LGMD-1D DNAJB6 Foundation WEBSITE:              www.lgmd1d.org FACEBOOK:        […]<\/p>","protected":false},"author":1,"featured_media":3077,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[102,94,104,95],"tags":[],"class_list":["post-3076","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-lgmd-d1-dnajb6-related","category-organization-interview","category-lgmd1d","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: LGMD-1D DNAJB6 Foundation - 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\/pl\/organization-interview\/2019\/10\/22\/lgmd-1d-foundation\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: LGMD-1D DNAJB6 Foundation - 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