{"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\/pt\/organization-interview\/2019\/05\/16\/breathe-with-md\/","title":{"rendered":"ORGANIZA\u00c7\u00c3O: Breathe With MD"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

NOME DA ORGANIZA\u00c7\u00c3O<\/strong>: Breathe with MD, Inc.<\/p>\n\n\n\n

S\u00cdTIO WEB:<\/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

EM QUE SUBTIPO DE LGMD SE CONCENTRA A SUA ORGANIZA\u00c7\u00c3O:\u00a0 <\/strong><\/p>\n\n\n\n

Respirar\nwith MD centra-se em todas as formas de doen\u00e7as neuromusculares (DNM), incluindo a\nDistrofia Muscular das Cinturas (LGMD).<\/p>\n\n\n\n

A SUA ORGANIZA\u00c7\u00c3O N\u00c3O TEM FINS LUCRATIVOS? EM CASO AFIRMATIVO, DE QUE TIPO:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n\n\n\n

Sim, somos uma institui\u00e7\u00e3o de caridade p\u00fablica sem fins lucrativos 501(c)(3)<\/p>\n\n\n\n

O QUE INSPIROU A\nCRIA\u00c7\u00c3O DA VOSSA ORGANIZA\u00c7\u00c3O<\/strong>:<\/p>\n\n\n\n

A Breathe with MD foi fundada por\nAndrea L. Klein em mem\u00f3ria da sua irm\u00e3 Cheryl Lewis, que morreu no 33.\nanivers\u00e1rio de Klein, aos 38 anos, devido a cuidados inadequados para a distrofia muscular (MD)\nrelacionada com a distrofia muscular (DM) em 2007. Quando Klein conheceu outras pessoas que tinham sido afectadas pelos\nmesmos erros m\u00e9dicos, apercebeu-se de que havia uma necessidade imensa de\nrespirat\u00f3ria na comunidade NMD. Ela queria um meio para que a hist\u00f3ria da sua irm\u00e3\nirm\u00e3 chegasse a mais pessoas e fam\u00edlias afectadas pela DNM e para evitar que outra\nfam\u00edlia sofresse uma perda semelhante. A Breathe with MD come\u00e7ou como uma\np\u00e1gina informativa do Facebook em 2014. Pouco depois, viu-se a necessidade de criar um\ngrupo de apoio no Facebook e, mais tarde, um s\u00edtio Web. A Breathe with MD patrocinou o Dr. John\nR. A apresenta\u00e7\u00e3o de Bach na Confer\u00eancia de 2015 da The Speak Foundation para\nIndiv\u00edduos com NMDs e continuou a aumentar seus seguidores e refinar sua\nmiss\u00e3o. Em 2018, Klein e seu marido Anthony haviam economizado o suficiente de seus pr\u00f3prios\nfinan\u00e7as pessoais para tomar as medidas legais necess\u00e1rias para que a organiza\u00e7\u00e3o\nse tornar \"Breathe with MD, Inc.\", uma corpora\u00e7\u00e3o sem fins lucrativos do Tennessee. Em fevereiro de\nde 2019, eles receberam sua isen\u00e7\u00e3o de impostos federais atrav\u00e9s do IRS como um EUA\nregistada como 501(c)(3) institui\u00e7\u00e3o de caridade p\u00fablica sem fins lucrativos.<\/p>\n\n\n\n

QUAL \u00c9 A MISS\u00c3O DA SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n\n\n\n

A miss\u00e3o da Breathe with MD, Inc.\nA miss\u00e3o \u00e9 \"educar sobre a fraqueza dos m\u00fasculos respirat\u00f3rios e os seus sintomas;\ntestes; e op\u00e7\u00f5es de interven\u00e7\u00e3o apropriadas (ventila\u00e7\u00e3o assistida e\ntosse mecanicamente assistida). O nosso foco \u00e9 a ventila\u00e7\u00e3o n\u00e3o-invasiva. Atrav\u00e9s dos\nAtrav\u00e9s dos nossos esfor\u00e7os educativos, divulgamos a consci\u00eancia de que a DNM afecta mais do que\nmobilidade, e ensinamos sobre os perigos da reten\u00e7\u00e3o de di\u00f3xido de carbono (CO2) e da\ninala\u00e7\u00e3o de oxig\u00e9nio suplementar (O2) sem assist\u00eancia de ventila\u00e7\u00e3o\".<\/strong><\/p>\n\n\n\n

QUE SERVI\u00c7OS\nA SUA ORGANIZA\u00c7\u00c3O PRESTA:<\/strong><\/p>\n\n\n\n

Para al\u00e9m da informa\u00e7\u00e3o educacional\ninforma\u00e7\u00f5es educacionais no site da Breathe with MD, Inc., a organiza\u00e7\u00e3o encontra e\ne publica artigos, v\u00eddeos e outros itens educacionais em tr\u00eas plataformas de\nplataformas de redes sociais (Facebook, Twitter e Instagram). Tamb\u00e9m t\u00eam um canal no YouTube\ncom v\u00eddeos e gr\u00e1ficos educativos animados que a Breathe with MD, Inc. desenvolve.\ndesenvolve. A Breathe with MD, Inc. patrocina e administra um grupo de apoio fechado no Facebook\ngrupo de apoio chamado \"Breathe with MD Support Group\" para aqueles que vivem\ncom NMD e seus entes queridos. \u00c9 uma comunidade de apoio com mais de 1.000\nmembros que utilizam ventila\u00e7\u00e3o n\u00e3o invasiva, ventila\u00e7\u00e3o invasiva, outros auxiliares\nou que n\u00e3o utilizam qualquer tipo de ajuda muscular \u00e0 respira\u00e7\u00e3o. Apenas os membros do grupo podem ver e\nresponder \u00e0s mensagens do grupo. Conforme os fundos permitirem, a Breathe with MD, Inc. participa em\nconfer\u00eancias de doentes e familiares com DNM, grupos de apoio e programas semelhantes para\npara transmitir uma mensagem baseada na perspetiva do doente, citando a literatura m\u00e9dica de apoio.\nliteratura m\u00e9dica de apoio. Os participantes n\u00e3o s\u00f3 ouvem uma mensagem informativa, como recebem gratuitamente\ncart\u00f5es de informa\u00e7\u00e3o respirat\u00f3ria laminados, literatura impressa e\ne, por vezes, podem participar num sorteio de um brinde.<\/p>\n\n\n\n

DE QUE \u00c9 QUE A SUA\nORGANIZA\u00c7\u00c3O DE QUE MAIS SE ORGULHA:<\/strong><\/p>\n\n\n\n

A Breathe with MD, Inc. est\u00e1 muito\norgulho de quantas pessoas que vivem com DNM dizem ter uma melhor\ncompreens\u00e3o da fraqueza dos m\u00fasculos respirat\u00f3rios e das op\u00e7\u00f5es de cuidados devido ao\no site, as publica\u00e7\u00f5es nas redes sociais e\/ou a sua participa\u00e7\u00e3o no grupo de apoio.\nAlguns disseram que isto lhes salvou literalmente a vida. Outros disseram que estavam aterrorizados\nde come\u00e7ar a receber assist\u00eancia de ventila\u00e7\u00e3o at\u00e9 encontrarem a Breathe with MD, Inc. Isto\ntorna o cumprimento de uma miss\u00e3o ainda mais satisfat\u00f3rio quando \u00e9 evidente que a\norganiza\u00e7\u00e3o tem um impacto positivo na comunidade que serve.<\/p>\n\n\n\n

O QUE QUER QUE O MUNDO SAIBA SOBRE A SUA ORGANIZA\u00c7\u00c3O<\/strong>:<\/p>\n\n\n\n

A Breathe with MD, Inc. \u00e9\n\u00e9 financiada por donativos individuais e \u00e9 dirigida por volunt\u00e1rios da comunidade NMD\ncomunidade. Eles s\u00e3o apaixonados pela sua miss\u00e3o e est\u00e3o empenhados em alcan\u00e7\u00e1-la.\na mesma.<\/p>\n\n\n\n

COMO \u00c9 QUE AS PESSOAS SE PODEM\nENVOLVER-SE NO APOIO \u00c0 SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n\n\n\n

A maior necessidade da Breathe with MD, Inc.\nA maior necessidade \u00e9 o financiamento de \"eventos de divulga\u00e7\u00e3o\" e os materiais impressos partilhados\npartilhados nos mesmos. \u00c9 nestes eventos que as pessoas que vivem com DNMs ouvem o que \u00e9\numa mensagem que pode salvar vidas, sobre o que pode fazer com que a sua condi\u00e7\u00e3o respirat\u00f3ria\nrespirat\u00f3ria piorar. Saem capacitados e equipados com conhecimentos para navegar na sua\npara navegar na sua jornada de fraqueza muscular respirat\u00f3ria e para se defenderem a si pr\u00f3prios\ncuidados respirat\u00f3rios adequados. A Breathe with MD, Inc. fica feliz em receber at\u00e9 mesmo\na mais pequena doa\u00e7\u00e3o. Estes podem ser feitos no Facebook da Breathe with MD, Inc. p\u00e1gina do Facebook\n(https:\/\/www.facebook.com\/BreatheWithMD\/) atrav\u00e9s do bot\u00e3o Donate (Doar), ou no\ns\u00edtio Web em https:\/\/breathewithmd.org\/donate.html. Se n\u00e3o for poss\u00edvel fazer donativos,\nh\u00e1 outras coisas \u00fateis a fazer, como escolher Breathe with MD, Inc. como\na sua institui\u00e7\u00e3o de caridade apoiada no Smile.Amazon.com, selecionando a organiza\u00e7\u00e3o como\n\"Favorita\" no eBay, e\/ou comprar qualquer um dos artigos listados com uma parte das\ndas suas vendas para beneficiar a institui\u00e7\u00e3o de caridade. Saiba mais em\nhttps:\/\/breathewithmd.org\/other-ways-to-help.html. Para crescer e chegar mais longe,\nA Breathe with MD, Inc. precisa de volunt\u00e1rios para ajudar em tarefas como angaria\u00e7\u00e3o de fundos,\ncuradoria de conte\u00fado para plataformas de m\u00eddia social e coordena\u00e7\u00e3o de eventos de divulga\u00e7\u00e3o.<\/p>\n\n\n\n

QUAL \u00c9 A MELHOR FORMA\nPARA CONTACTAR A SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n\n\n\n

Enviar uma mensagem de correio eletr\u00f3nico para BreatheWithMD@charter.net<\/a>. ou uma mensagem no Facebook em 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\/pt\/organization-interview\/2019\/05\/16\/breathe-with-md\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\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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