{"id":20335,"date":"2019-07-29T00:00:00","date_gmt":"2019-07-29T00:00:00","guid":{"rendered":"https:\/\/fundacionnoelia.org\/actualidad\/2019-congenital-muscle-disease-scientific-family-conference\/"},"modified":"2022-05-10T09:54:51","modified_gmt":"2022-05-10T09:54:51","slug":"2019-congenital-muscle-disease-scientific-family-conference","status":"publish","type":"post","link":"https:\/\/fundacionnoelia.org\/en\/actualidad\/2019-congenital-muscle-disease-scientific-family-conference\/","title":{"rendered":"2019 Congenital Muscle Disease Scientific &#038; Family Conference"},"content":{"rendered":"<p style=\"text-align: justify;\">Last July, Noelia Foundation attended <strong>the 2019 Congenital Muscle Disease Scientific &amp; Family Conference organized in Chicago by Cure CMD<\/strong>, an event that brought together researchers from around the world to share their experience on these congenital diseases.<\/p>\n<p style=\"text-align: justify;\">Once again<strong>, Noelia Foundation\u00a0<\/strong>was present at this unique reference event to learn first-hand about the progress that is being made, and to make sure our families are up to date\u00a0with the latest trends in therapy and patient management.<\/p>\n<p style=\"text-align: justify;\"><a href=\"https:\/\/fundacionnoelia.org\/wp-content\/uploads\/2019\/09\/190725_Cure_CMD_SciFam_families_ENG.pdf\" target=\"_blank\" rel=\"noopener\"><strong><em>Here\u00a0<\/em><em>you can find a summary article with the congress highlights<\/em><em>.<\/em><\/strong><\/a><\/p>\n<p style=\"text-align: justify;\">We also had the privilege ofpresenting <strong>our first poster communication\u00a0<\/strong>at a conference meeting of the highest social and scientific level, in the field of congenital muscular dystrophies. The poster showcased our work and achievements so far, as well as the projects that, with everyone\u2019s help, are currently being funded in our fight against Col6-CMD.<\/p>\n<p style=\"text-align: justify;\">Finally, we had the opportunity to personally meet with several worldwide experts on Collagen-VI CMD such as <strong>Dr. C. B\u00f6nnemann<\/strong>, <strong>Dr. V. Bolduc<\/strong>, <strong>Dr. R. Foley <\/strong>and\u00a0<strong>Dr. Russell<\/strong>, among others, who shared with us the current status of the research projects currently ongoing at the <strong>NINDS\u00a0<\/strong>(National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health, in Washington), that are co-funded by the Noelia Foundation.<\/p>\n<p style=\"text-align: justify;\">We came back full of energy, and with very encouraging news for Collagen VI patients. From <a href=\"https:\/\/www.facebook.com\/fundacionnoelia\/\" target=\"_blank\" rel=\"noopener\">Noelia Foundation<\/a> we want to wholeheartedly thank <a href=\"https:\/\/www.facebook.com\/CureCMD\/?__tn__=K-R&amp;eid=ARD7072TlWccQd6-g7FkbXcA8yrsYFWp79gP_ToKFZm3_rHq-voVX0zL7tUwqSLgn6bu2XEtbZxhgbho&amp;fref=mentions&amp;__xts__%5B0%5D=68.ARCThSC8MX-R-al9uXH9ZCz1jaCUYISIpsmy9dp-dxJ-5txODNFgJdRkVxQy2gLChJVg8swaTepMg_7ppsTG7M3zI_NJsl0Bh-htuuMa0djAxPCBH6e6CyWIEBc1z-4fSF8wMF4IoPZb4tBawFm2mLgNuSvSSOp39nBauxEMKL4A5289jX8Ry19pnd362QdsK6J06i9g2mbtrMbuub7XkDDWSb1KpcIjm-J0L9mX3zHcOLgNTgOBcPSz4GRvgVxWf6AoTk5OSKPLFvNgNPyDMwhPUZjG9kSfngVncVDo_gX2IuD9Mm98LYqtIU2MZ98Rqf8fnAuNO6qWYK9rfEo4AQaWyw\" target=\"_blank\" rel=\"noopener\">Cure CMD<\/a>, particularly <a href=\"https:\/\/www.facebook.com\/profile.php?id=100014006914219&amp;__tn__=K-R&amp;eid=ARAv_-Sw1IJoXYJGlT5mjCQzqtUHYLj1FG5wyJ_nwHJEDjK0FPr8NlSNwiME1z8dbqdMpWFyiskx-byR&amp;fref=mentions&amp;__xts__%5B0%5D=68.ARCThSC8MX-R-al9uXH9ZCz1jaCUYISIpsmy9dp-dxJ-5txODNFgJdRkVxQy2gLChJVg8swaTepMg_7ppsTG7M3zI_NJsl0Bh-htuuMa0djAxPCBH6e6CyWIEBc1z-4fSF8wMF4IoPZb4tBawFm2mLgNuSvSSOp39nBauxEMKL4A5289jX8Ry19pnd362QdsK6J06i9g2mbtrMbuub7XkDDWSb1KpcIjm-J0L9mX3zHcOLgNTgOBcPSz4GRvgVxWf6AoTk5OSKPLFvNgNPyDMwhPUZjG9kSfngVncVDo_gX2IuD9Mm98LYqtIU2MZ98Rqf8fnAuNO6qWYK9rfEo4AQaWyw\" target=\"_blank\" rel=\"noopener\">Gustavo Dziewczapolski<\/a>\u00a0and\u00a0<a href=\"https:\/\/www.facebook.com\/rachel.ayn.alvarez?__tn__=K-R&amp;eid=ARCaIpvong7OAva2ucruv6bgsYdiTaJ7exxRrJAyWKm-X9tZIx-3SV3uo1eb3qRall7IyKAhQTM6uYiK&amp;fref=mentions&amp;__xts__%5B0%5D=68.ARCThSC8MX-R-al9uXH9ZCz1jaCUYISIpsmy9dp-dxJ-5txODNFgJdRkVxQy2gLChJVg8swaTepMg_7ppsTG7M3zI_NJsl0Bh-htuuMa0djAxPCBH6e6CyWIEBc1z-4fSF8wMF4IoPZb4tBawFm2mLgNuSvSSOp39nBauxEMKL4A5289jX8Ry19pnd362QdsK6J06i9g2mbtrMbuub7XkDDWSb1KpcIjm-J0L9mX3zHcOLgNTgOBcPSz4GRvgVxWf6AoTk5OSKPLFvNgNPyDMwhPUZjG9kSfngVncVDo_gX2IuD9Mm98LYqtIU2MZ98Rqf8fnAuNO6qWYK9rfEo4AQaWyw\" target=\"_blank\" rel=\"noopener\">Rachel Alvarez<\/a>, for organizing this wonderful venue, bringing together experts to share their knowledge, and facilitating that therapies for these diseases move ahead. Thank you all!<\/p>\n<p style=\"text-align: justify;\"><a href=\"https:\/\/fundacionnoelia.org\/wp-content\/uploads\/2019\/09\/190725_Cure_CMD_SciFam_01.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-4121\" src=\"https:\/\/fundacionnoelia.org\/wp-content\/uploads\/2019\/09\/190725_Cure_CMD_SciFam_01.jpg\" alt=\"190725_Cure_CMD_SciFam_01\" width=\"600\" height=\"551\" srcset=\"https:\/\/fundacionnoelia.org\/wp-content\/uploads\/2019\/09\/190725_Cure_CMD_SciFam_01.jpg 746w, https:\/\/fundacionnoelia.org\/wp-content\/uploads\/2019\/09\/190725_Cure_CMD_SciFam_01-300x275.jpg 300w, https:\/\/fundacionnoelia.org\/wp-content\/uploads\/2019\/09\/190725_Cure_CMD_SciFam_01-600x551.jpg 600w\" sizes=\"auto, (max-width: 600px) 100vw, 600px\" \/><\/a><\/p>\n<p style=\"text-align: justify;\"><a href=\"https:\/\/fundacionnoelia.org\/wp-content\/uploads\/2019\/09\/190725_Cure_CMD_SciFam_02.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-4122\" src=\"https:\/\/fundacionnoelia.org\/wp-content\/uploads\/2019\/09\/190725_Cure_CMD_SciFam_02-768x1024.jpg\" alt=\"190725_Cure_CMD_SciFam_02\" width=\"600\" height=\"800\" \/><\/a><\/p>\n<p><!--more--><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Last July, Noelia Foundation attended the 2019 Congenital Muscle Disease Scientific &amp; Family Conference organized in Chicago by Cure CMD, an event that brought together researchers from around the world to share their experience on these congenital diseases. Once again, Noelia Foundation\u00a0was present at this unique reference event to learn first-hand about the progress that&hellip;<\/p>\n","protected":false},"author":1,"featured_media":4123,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[114,113],"tags":[],"post_series":[],"class_list":["post-20335","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-collagenvi-conferences-meetings-2","category-day-to-day-fundation","entry","has-media"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>2019 Congenital Muscle Disease Scientific &amp; Family Conference - Fundaci\u00f3n Noelia<\/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:\/\/fundacionnoelia.org\/en\/actualidad\/2019-congenital-muscle-disease-scientific-family-conference\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"2019 Congenital Muscle Disease Scientific &amp; Family Conference - Fundaci\u00f3n Noelia\" \/>\n<meta property=\"og:description\" content=\"Last July, Noelia Foundation attended the 2019 Congenital Muscle Disease Scientific &amp; Family Conference organized in Chicago by Cure CMD, an event that brought together researchers from around the world to share their experience on these congenital diseases. 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