{"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\/es\/organization-interview\/2019\/05\/16\/breathe-with-md\/","title":{"rendered":"ORGANIZACI\u00d3N: Breathe With MD"},"content":{"rendered":"<figure class=\"wp-block-image size-large\"><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\/2020\/01\/Breathe-with-MD.png\" alt=\"\" class=\"lazyload wp-image-3200\"\/><\/figure>\n\n\n\n<p><strong>NOMBRE DE LA ORGANIZACI\u00d3N<\/strong>:          Respira con MD, Inc.<\/p>\n\n\n\n<p><strong>P\u00c1GINA WEB:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0<a href=\"https:\/\/breathewithmd.org\/\" target=\"_blank\" rel=\"noreferrer noopener\" aria-label=\"https:\/\/breathewithmd.org\/ (se abre en una nueva pesta\u00f1a)\">https:\/\/breathewithmd.org\/<\/a><\/p>\n\n\n\n<p><strong>FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0  <\/strong><a rel=\"noreferrer noopener\" aria-label=\" (se abre en una nueva pesta\u00f1a)\" href=\"https:\/\/www.facebook.com\/BreatheWithMD\/\" target=\"_blank\">https:\/\/www.facebook.com\/BreatheWithMD\/<\/a><\/p>\n\n\n\n<p><strong>TWITTER:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0  <\/strong><a href=\"https:\/\/twitter.com\/BreatheMd\" target=\"_blank\" rel=\"noreferrer noopener\" aria-label=\"@BreatheMD (se abre en una nueva pesta\u00f1a)\">@BreatheMD<\/a><strong> <\/strong><\/p>\n\n\n\n<p><strong>EN QU\u00c9 SUBTIPO DE LGMD SE CENTRA SU ORGANIZACI\u00d3N:\u00a0 <\/strong><\/p>\n\n\n\n<p>Respira\ncon MD se centra en todas las formas de enfermedades neuromusculares (ENM), incluida la distrofia muscular de cinturas de las extremidades (LGMD).\nMuscular de Cinturas (LGMD).<\/p>\n\n\n\n<p><strong>\u00bfES SU ORGANIZACI\u00d3N UNA ORGANIZACI\u00d3N SIN \u00c1NIMO DE LUCRO? EN CASO AFIRMATIVO, \u00bfDE QU\u00c9 TIPO?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n\n\n\n<p>S\u00ed, somos una organizaci\u00f3n ben\u00e9fica p\u00fablica sin \u00e1nimo de lucro 501(c)(3).<\/p>\n\n\n\n<p><strong>QU\u00c9 INSPIR\u00d3 LA\nCREACI\u00d3N DE SU ORGANIZACI\u00d3N<\/strong>:<\/p>\n\n\n\n<p>Respira con DM fue fundada por\nAndrea L. Klein en memoria de su hermana Cheryl Lewis, que muri\u00f3 el d\u00eda en que Klein cumpl\u00eda 33 a\u00f1os, a la edad de 38, a causa de una atenci\u00f3n inadecuada relacionada con la distrofia muscular.\nKlein a la edad de 38 a\u00f1os a causa de un tratamiento inadecuado de una insuficiencia\n(DM) en 2007. Cuando Klein conoci\u00f3 a otros afectados por los mismos\nerrores m\u00e9dicos, se dio cuenta de que hab\u00eda una inmensa necesidad de educaci\u00f3n\nrespiratoria en la comunidad de personas con distrofia muscular. Quer\u00eda que la historia de su hermana\na m\u00e1s personas y familias afectadas por la enfermedad y evitar que otra familia sufriera una p\u00e9rdida similar.\nfamilia sufriera una p\u00e9rdida similar. Respira con DM comenz\u00f3 como una\np\u00e1gina informativa de Facebook en 2014. Poco despu\u00e9s, se vio la necesidad de crear un grupo de apoyo en Facebook y, m\u00e1s tarde, un sitio web.\ngrupo de apoyo en Facebook y, m\u00e1s tarde, un sitio web. Respira con DM patrocin\u00f3 al Dr. John\nR. Bach en la Conferencia de 2015 de la Speak Foundation para\nPersonas con ENM y sigui\u00f3 aumentando el n\u00famero de seguidores y perfeccionando su\nmisi\u00f3n. En 2018, Klein y su marido Anthony hab\u00edan ahorrado lo suficiente de sus propias\nfinanzas personales para emprender las acciones legales necesarias para que la organizaci\u00f3n se\nse convirtiera en \"Breathe with MD, Inc\", una corporaci\u00f3n sin fines de lucro de Tennessee. En febrero\nde 2019, recibieron su exenci\u00f3n de impuestos federales a trav\u00e9s del IRS como una US\nUU registrada como organizaci\u00f3n ben\u00e9fica p\u00fablica sin \u00e1nimo de lucro 501(c)(3).<\/p>\n\n\n\n<p><strong>CU\u00c1L ES LA MISI\u00d3N DE SU ORGANIZACI\u00d3N:<\/strong><\/p>\n\n\n\n<p>La misi\u00f3n de Breathe with MD, Inc.\ntiene como misi\u00f3n \"educar sobre la debilidad de los m\u00fasculos respiratorios y sus s\u00edntomas;\npruebas; y opciones de intervenci\u00f3n apropiadas (ventilaci\u00f3n asistida y\ntos asistida mec\u00e1nicamente). Nos centramos en la ventilaci\u00f3n no invasiva. A trav\u00e9s de\nA trav\u00e9s de nuestros esfuerzos educativos, difundimos la conciencia de que la NMD afecta a m\u00e1s de\nla movilidad, y ense\u00f1amos los peligros de la retenci\u00f3n de di\u00f3xido de carbono (CO2) y la inhalaci\u00f3n de ox\u00edgeno suplementario.\ninhalaci\u00f3n de ox\u00edgeno (O2) suplementario sin asistencia ventilatoria\".<strong><\/strong><\/p>\n\n\n\n<p><strong>QU\u00c9 SERVICIOS PRESTA\nPRESTA SU ORGANIZACI\u00d3N:<\/strong><\/p>\n\n\n\n<p>Adem\u00e1s de la informaci\u00f3n\neducativa en el sitio web de Breathe with MD, Inc.\nart\u00edculos, v\u00eddeos y otros materiales educativos en tres plataformas de\nsociales (Facebook, Twitter e Instagram). Tambi\u00e9n tienen un canal en YouTube\ncon v\u00eddeos y gr\u00e1ficos educativos animados que Breathe with MD, Inc.\ndesarrolla. Breathe with MD, Inc. patrocina y administra un grupo de apoyo cerrado en Facebook\ncerrado de Facebook llamado \"Breathe with MD Support Group\" para las personas\ny sus seres queridos. Es una comunidad de apoyo con m\u00e1s de 1.000\nmiembros que utilizan ventilaci\u00f3n no invasiva, ventilaci\u00f3n invasiva, otras ayudas\nrespiratoria o no la utilizan. S\u00f3lo los miembros del grupo pueden ver y\nresponder a los mensajes del grupo. Cuando la financiaci\u00f3n lo permite, Breathe with MD, Inc. asiste a\nasiste a conferencias de pacientes y familiares, grupos de apoyo y programas similares para transmitir un mensaje basado en la perspectiva del paciente.\nprogramas similares para transmitir un mensaje basado en la perspectiva del paciente\nm\u00e9dica. Los asistentes no s\u00f3lo escuchan un mensaje informativo, sino que reciben gratuitamente\ninformaci\u00f3n respiratoria, literatura impresa y, a veces, participan en el sorteo de un premio.\na veces pueden participar en un sorteo.<\/p>\n\n\n\n<p><strong>DE QU\u00c9\nORGANIZACI\u00d3N M\u00c1S ORGULLOSA:<\/strong><\/p>\n\n\n\n<p>Breathe with MD, Inc. est\u00e1 muy\nm\u00e1s orgullosa del n\u00famero de personas que viven con la enfermedad\nde la debilidad de los m\u00fasculos respiratorios y las opciones de atenci\u00f3n gracias a\nel sitio web, las publicaciones en las redes sociales y\/o su pertenencia al grupo de apoyo.\nAlgunos han dicho que esto les ha salvado literalmente la vida. Otros han dicho que estaban aterrorizados\nde comenzar la asistencia respiratoria hasta que encontraron a Breathe with MD, Inc. Este\nhace que cumplir una misi\u00f3n sea a\u00fan m\u00e1s satisfactorio cuando es evidente que la\norganizaci\u00f3n tiene un impacto positivo en la comunidad a la que sirve.<\/p>\n\n\n\n<p><strong>\u00bfQU\u00c9 QUIERE QUE EL MUNDO SEPA DE SU ORGANIZACI\u00d3N?<\/strong>:<\/p>\n\n\n\n<p>Respira con DM, Inc.\nse financia con donaciones individuales y est\u00e1 dirigida por voluntarios de la comunidad de NMD.\nNMD. Su misi\u00f3n les apasiona y se comprometen a cumplirla.\nalcanzarla.<\/p>\n\n\n\n<p><strong>C\u00d3MO PUEDE LA GENTE\nPARTICIPAR EN EL APOYO A SU ORGANIZACI\u00d3N:<\/strong><\/p>\n\n\n\n<p>La mayor necesidad de Breathe with MD, Inc.\nes la financiaci\u00f3n de los \"actos de divulgaci\u00f3n\" y el material impreso que se distribuye en ellos.\nen ellos. Es en estos eventos donde las personas que viven con enfermedades respiratorias\nsobre lo que puede empeorar su enfermedad respiratoria.\nrespiratoria. Salen de all\u00ed empoderados y equipados con los conocimientos necesarios para navegar por su\nsu viaje por la debilidad muscular respiratoria y abogar por s\u00ed mismos para\ncuidados respiratorios adecuados. Breathe with MD, Inc. se alegra de recibir incluso\nla m\u00e1s peque\u00f1a donaci\u00f3n. Pueden hacerse en la p\u00e1gina de Breathe with MD, Inc. Facebook\n(https:\/\/www.facebook.com\/BreatheWithMD\/) a trav\u00e9s del bot\u00f3n Donar, o en el sitio web\nsitio web en https:\/\/breathewithmd.org\/donate.html. Si no es posible hacer donaciones\nhay otras cosas \u00fatiles que hacer como elegir Breathe with MD, Inc. como\ncomo organizaci\u00f3n ben\u00e9fica en Smile.Amazon.com, seleccionar la organizaci\u00f3n como\norganizaci\u00f3n como su \"Favorito\" en eBay, y\/o comprando cualquiera de los art\u00edculos\nsus ventas a beneficio de la organizaci\u00f3n ben\u00e9fica. M\u00e1s informaci\u00f3n en\nhttps:\/\/breathewithmd.org\/other-ways-to-help.html. Para crecer y llegar a m\u00e1s,\nBreathe with MD, Inc. necesita voluntarios que ayuden en tareas como la recaudaci\u00f3n de fondos,\nla elaboraci\u00f3n de contenidos para las redes sociales y la coordinaci\u00f3n de eventos de divulgaci\u00f3n.<\/p>\n\n\n\n<p><strong>CU\u00c1L ES LA MEJOR MANERA\nPONERSE EN CONTACTO CON SU ORGANIZACI\u00d3N:<\/strong><\/p>\n\n\n\n<p>Env\u00ede un correo electr\u00f3nico a <a href=\"mailto:BreatheWithMD@charter.net\">BreatheWithMD@charter.net<\/a>. o un mensaje de Facebook en <a href=\"https:\/\/www.facebook.com\/BreatheWithMD\/\" target=\"_blank\" rel=\"noreferrer noopener\" aria-label=\" (se abre en una nueva pesta\u00f1a)\">https:\/\/www.facebook.com\/BreatheWithMD<\/a>\u00a0 <\/p>","protected":false},"excerpt":{"rendered":"<p>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 [&hellip;]<\/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":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>ORGANIZATION: 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\/es\/organization-interview\/2019\/05\/16\/breathe-with-md\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\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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