{"id":3199,"date":"2019-05-16T16:17:00","date_gmt":"2019-05-16T21:17:00","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3199"},"modified":"2019-05-16T16:17:00","modified_gmt":"2019-05-16T21:17:00","slug":"breathe-with-md","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/organization-interview\/2019\/05\/16\/breathe-with-md\/","title":{"rendered":"ORGANIZACJA: Breathe With MD"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

NAZWA ORGANIZACJI<\/strong>: Breathe with MD, Inc.<\/p>\n\n\n\n

STRONA INTERNETOWA:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0https:\/\/breathewithmd.org\/<\/a><\/p>\n\n\n\n

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

TWITTER:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>@BreatheMD<\/a> <\/strong><\/p>\n\n\n\n

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

Breathe\nwith MD koncentruje si\u0119 na wszystkich formach chor\u00f3b nerwowo-mi\u0119\u015bniowych (NMD), w tym dystrofii mi\u0119\u015bniowej ko\u0144czyn (LGMD).\nDystrofia mi\u0119\u015bniowa ko\u0144czyn (LGMD).<\/p>\n\n\n\n

CZY ORGANIZACJA JEST ORGANIZACJ\u0104 NON-PROFIT? JE\u015aLI TAK, TO JAKIEGO TYPU:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n\n\n\n

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

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

Organizacja Breathe with MD zosta\u0142a za\u0142o\u017cona przez\nAndre\u0119 L. Klein ku pami\u0119ci jej siostry Cheryl Lewis, kt\u00f3ra zmar\u0142a w dniu 33. urodzin Klein w wieku 38 lat z powodu\nw wieku 38 lat z powodu niew\u0142a\u015bciwej opieki zwi\u0105zanej z dystrofi\u0105 mi\u0119\u015bniow\u0105 (MD).\nniewydolno\u015bci\u0105 oddechow\u0105 w 2007 roku. Kiedy Klein spotka\u0142a wi\u0119cej os\u00f3b dotkni\u0119tych tymi samymi b\u0142\u0119dami\nte same b\u0142\u0119dy medyczne, zda\u0142a sobie spraw\u0119, \u017ce istnieje ogromna potrzeba\noddechowego w spo\u0142eczno\u015bci NMD. Chcia\u0142a, aby historia jej siostry mog\u0142a\ndotar\u0142a do wi\u0119kszej liczby os\u00f3b i rodzin dotkni\u0119tych NMD oraz aby zapobiec\nrodzinie podobnej straty. Breathe with MD zacz\u0119\u0142o dzia\u0142a\u0107 jako\ninformacyjna strona na Facebooku w 2014 roku. Wkr\u00f3tce potem pojawi\u0142a si\u0119 potrzeba stworzenia osobnej grupy wsparcia na Facebooku, a nast\u0119pnie strony internetowej.\ngrupy wsparcia na Facebooku, a p\u00f3\u017aniej strony internetowej. Breathe with MD sponsorowa\u0142 dr John\nR. Bacha na konferencji The Speak Foundation w 2015 r. dla os\u00f3b z NMD.\ndla os\u00f3b z NMD i nadal rozwija\u0142a si\u0119 i udoskonala\u0142a swoj\u0105 misj\u0119.\nmisj\u0119. W 2018 roku Klein i jej m\u0105\u017c Anthony zaoszcz\u0119dzili wystarczaj\u0105co du\u017co w\u0142asnych\nosobiste finanse, aby podj\u0105\u0107 dzia\u0142ania prawne niezb\u0119dne dla organizacji, aby\nsta\u0107 si\u0119 \"Breathe with MD, Inc.\", korporacj\u0105 non-profit z Tennessee. W lutym\n2019 r. otrzymali federalne zwolnienie podatkowe za po\u015brednictwem IRS jako US\nzarejestrowana 501 (c) (3) publiczna organizacja charytatywna non-profit.<\/p>\n\n\n\n

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

Misj\u0105 Breathe with MD, Inc.\njest \"edukowanie na temat os\u0142abienia mi\u0119\u015bni oddechowych i jego objaw\u00f3w;\ntestowanie; i odpowiednie opcje interwencji (wspomagana wentylacja i\nkaszel wspomagany mechanicznie). Skupiamy si\u0119 na wentylacji nieinwazyjnej. Poprzez\nnasze wysi\u0142ki edukacyjne, szerzymy \u015bwiadomo\u015b\u0107, \u017ce NMD wp\u0142ywa nie tylko na\nmobilno\u015b\u0107 i uczymy o niebezpiecze\u0144stwach zwi\u0105zanych z zatrzymywaniem dwutlenku w\u0119gla (CO2) i\nwdychanie dodatkowego tlenu (O2) bez wspomagania wentylacji\".<\/strong><\/p>\n\n\n\n

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

Opr\u00f3cz informacji edukacyjnych\ninformacje na stronie internetowej Breathe with MD, Inc. organizacja znajduje i\npublikuje artyku\u0142y, filmy i inne materia\u0142y edukacyjne na trzech platformach spo\u0142eczno\u015bciowych\nplatformach spo\u0142eczno\u015bciowych (Facebook, Twitter i Instagram). Posiada r\u00f3wnie\u017c kana\u0142 YouTube\nz filmami i animowanymi grafikami edukacyjnymi, kt\u00f3re opracowuje Breathe with MD, Inc.\nrozwija. Breathe with MD, Inc. sponsoruje i zarz\u0105dza zamkni\u0119t\u0105 grup\u0105 wsparcia na Facebooku o nazwie \"Oddychaj z MD\".\ngrup\u0119 wsparcia o nazwie \"Breathe with MD Support Group\" dla os\u00f3b \u017cyj\u0105cych\nz NMD i ich bliskich. Jest to wspieraj\u0105ca spo\u0142eczno\u015b\u0107 z ponad 1,000\ncz\u0142onk\u00f3w, kt\u00f3rzy korzystaj\u0105 z wentylacji nieinwazyjnej, wentylacji inwazyjnej, innych\nwspomagania mi\u0119\u015bni oddechowych lub bez wspomagania mi\u0119\u015bni oddechowych. Tylko cz\u0142onkowie grupy mog\u0105 widzie\u0107 i\nodpowiada\u0107 na posty grupy. Je\u015bli pozwalaj\u0105 na to fundusze, Breathe with MD, Inc. uczestniczy w\nkonferencje pacjent\u00f3w i rodzin NMD, grupy wsparcia i podobne programy, aby\naby dostarczy\u0107 wiadomo\u015b\u0107 opart\u0105 na perspektywie pacjenta, cytuj\u0105c wspieraj\u0105c\u0105 literatur\u0119 medyczn\u0105.\nliteratur\u0119 medyczn\u0105. Uczestnicy nie tylko s\u0142uchaj\u0105 wiadomo\u015bci informacyjnych, ale otrzymuj\u0105 bezp\u0142atne\nlaminowane karty portfelowe z informacjami na temat uk\u0142adu oddechowego, drukowan\u0105 literatur\u0119 oraz\nczasami mog\u0105 wzi\u0105\u0107 udzia\u0142 w losowaniu upomink\u00f3w.<\/p>\n\n\n\n

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

Breathe with MD, Inc. jest najbardziej\ndumny z tego, jak wiele os\u00f3b \u017cyj\u0105cych z NMD twierdzi, \u017ce ma lepsze\nzrozumienie os\u0142abienia mi\u0119\u015bni oddechowych i mo\u017cliwo\u015bci opieki z powodu\nstrony internetowej, post\u00f3w w mediach spo\u0142eczno\u015bciowych i\/lub cz\u0142onkostwa w grupie wsparcia.\nNiekt\u00f3rzy twierdz\u0105, \u017ce dos\u0142ownie uratowa\u0142o im to \u017cycie. Inni powiedzieli, \u017ce byli przera\u017ceni\nrozpocz\u0119cia wspomagania wentylacji, dop\u00f3ki nie znale\u017ali Breathe with MD, Inc. To\nsprawia, \u017ce wype\u0142nianie misji jest tym bardziej satysfakcjonuj\u0105ce, gdy jest oczywiste, \u017ce organizacja ma pozytywny wp\u0142yw na spo\u0142eczno\u015b\u0107.\norganizacja ma pozytywny wp\u0142yw na spo\u0142eczno\u015b\u0107, kt\u00f3rej s\u0142u\u017cy.<\/p>\n\n\n\n

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

Breathe with MD, Inc. jest\njest finansowany z indywidualnych darowizn i jest wolontariatem prowadzonym przez osoby ze spo\u0142eczno\u015bci NMD\nspo\u0142eczno\u015b\u0107. S\u0105 pasjonatami swojej misji i zaanga\u017cowani w jej realizacj\u0119.\ni zaanga\u017cowani w jej realizacj\u0119.<\/p>\n\n\n\n

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

Najwi\u0119ksz\u0105 potrzeb\u0105 Breathe with MD, Inc.\nnajwi\u0119ksz\u0105 potrzeb\u0105 jest finansowanie \"wydarze\u0144 informacyjnych\" i udost\u0119pnianych na nich materia\u0142\u00f3w drukowanych.\nna nich udost\u0119pniane. To w\u0142a\u015bnie podczas tych wydarze\u0144 osoby \u017cyj\u0105ce z NMD s\u0142ysz\u0105, co jest\ncz\u0119sto ratuj\u0105c\u0105 \u017cycie wiadomo\u015b\u0107 o tym, co mo\u017ce pogorszy\u0107 ich stan oddechowy.\npogorszy\u0107 ich stan uk\u0142adu oddechowego. Opuszczaj\u0105 je wzmocnieni i wyposa\u017ceni w wiedz\u0119, dzi\u0119ki kt\u00f3rej mog\u0105 porusza\u0107 si\u0119 po swojej\nw podr\u00f3\u017cy z os\u0142abieniem mi\u0119\u015bni oddechowych i do samodzielnego promowania w\u0142asnej\nodpowiedni\u0105 opiek\u0119 oddechow\u0105. Breathe with MD, Inc. z rado\u015bci\u0105 przyjmuje nawet\nnajmniejsza darowizna. Mo\u017cna je sk\u0142ada\u0107 na stronie Breathe with MD, Inc. Facebook\nstrona (https:\/\/www.facebook.com\/BreatheWithMD\/) za pomoc\u0105 przycisku Przeka\u017c darowizn\u0119 lub na\nstronie internetowej pod adresem https:\/\/breathewithmd.org\/donate.html. Je\u015bli darowizny nie s\u0105 mo\u017cliwe,\ns\u0105 inne pomocne rzeczy do zrobienia, takie jak wybranie Breathe with MD, Inc. jako\njako wspieran\u0105 organizacj\u0119 charytatywn\u0105 na Smile.Amazon.com, wybieraj\u0105c organizacj\u0119 jako swoj\u0105\n\"Ulubione\" w serwisie eBay i \/ lub zakup dowolnego z wymienionych przedmiot\u00f3w z cz\u0119\u015bci\u0105\nich sprzeda\u017cy na rzecz organizacji charytatywnej. Wi\u0119cej informacji mo\u017cna znale\u017a\u0107 na stronie\nhttps:\/\/breathewithmd.org\/other-ways-to-help.html. Rozwija\u0107 si\u0119 i dociera\u0107 do wi\u0119kszej liczby os\u00f3b,\nBreathe with MD, Inc. potrzebuje wolontariuszy do pomocy w zadaniach takich jak zbieranie funduszy,\ntworzenie tre\u015bci na platformy medi\u00f3w spo\u0142eczno\u015bciowych i koordynowanie wydarze\u0144 informacyjnych.<\/p>\n\n\n\n

JAKI JEST NAJLEPSZY SPOS\u00d3B\nSKONTAKTOWA\u0106 SI\u0118 Z ORGANIZACJ\u0104:<\/strong><\/p>\n\n\n\n

Wy\u015blij wiadomo\u015b\u0107 e-mail na adres BreatheWithMD@charter.net<\/a>. lub wiadomo\u015b\u0107 na Facebooku pod adresem https:\/\/www.facebook.com\/BreatheWithMD<\/a>\u00a0 <\/p>","protected":false},"excerpt":{"rendered":"

NAM E OF ORGANIZATION:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Breathe with MD, Inc. WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 […]<\/p>","protected":false},"author":1,"featured_media":3200,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,95],"tags":[],"class_list":["post-3199","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: Breathe With MD - 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\/05\/16\/breathe-with-md\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Breathe With MD - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"NAM E OF ORGANIZATION:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Breathe with MD, Inc. 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