PPMD's Videos (PPMD Community) - PPMD Community 2022-01-17T16:23:28Z http://community.parentprojectmd.org/video/video/listForContributor?screenName=parentprojectmd&rss=yes&xn_auth=no MD STARnet webinar tag:community.parentprojectmd.org,2013-04-11:1187424:Video:173253 2013-04-11T03:57:49.560Z PPMD http://community.parentprojectmd.org/profile/parentprojectmd <a href="http://community.parentprojectmd.org/video/md-starnet-webinar"><br /> <img src="http://storage.ning.com/topology/rest/1.0/file/get/2177539751?profile=original&amp;width=240&amp;height=180" width="240" height="180" alt="Thumbnail" /><br /> </a> <a href="http://community.parentprojectmd.org/video/md-starnet-webinar"><br /> <img src="http://storage.ning.com/topology/rest/1.0/file/get/2177539751?profile=original&amp;width=240&amp;height=180" width="240" height="180" alt="Thumbnail" /><br /> </a> Webinar: Cardiac Care for Adults with Duchenne tag:community.parentprojectmd.org,2013-03-13:1187424:Video:169861 2013-03-13T19:13:15.663Z PPMD http://community.parentprojectmd.org/profile/parentprojectmd <a href="http://community.parentprojectmd.org/video/webinar-cardiac-care-for-adults-with-duchenne"><br /> <img alt="Thumbnail" height="180" src="http://storage.ning.com/topology/rest/1.0/file/get/2177539257?profile=original&amp;width=240&amp;height=180" width="240"></img><br /> </a> <br></br>Cardiac care and cardiomyopathy remain major areas of interest and concern for all people with Duchenne. While advances in respiratory care have improved respiratory outcomes, dilated cardiomyopathy and heart failure remain the leading cause of death in… <a href="http://community.parentprojectmd.org/video/webinar-cardiac-care-for-adults-with-duchenne"><br /> <img src="http://storage.ning.com/topology/rest/1.0/file/get/2177539257?profile=original&amp;width=240&amp;height=180" width="240" height="180" alt="Thumbnail" /><br /> </a><br />Cardiac care and cardiomyopathy remain major areas of interest and concern for all people with Duchenne. While advances in respiratory care have improved respiratory outcomes, dilated cardiomyopathy and heart failure remain the leading cause of death in Duchenne. Webinar: The use of Ventricular Assist Devices in Duchenne tag:community.parentprojectmd.org,2013-01-30:1187424:Video:165435 2013-01-30T15:41:23.912Z PPMD http://community.parentprojectmd.org/profile/parentprojectmd <a href="http://community.parentprojectmd.org/video/cardiac-webinar-series-part-3-the-use-of-ventricular-assist-devic"><br /> <img alt="Thumbnail" height="180" src="http://storage.ning.com/topology/rest/1.0/file/get/2177540284?profile=original&amp;width=240&amp;height=180" width="240"></img><br /> </a> <br></br>End stage dilated cardiomyopathy (DCM) is a known complication of Duchenne muscular dystrophy. DCM leads to end stage heart failure and the premature death of patients with Duchenne. Given recent advances in respiratory care, heart failure is the cause of death in more than 40% of patients with Duchenne.<br></br> <br></br> A "ventricular… <a href="http://community.parentprojectmd.org/video/cardiac-webinar-series-part-3-the-use-of-ventricular-assist-devic"><br /> <img src="http://storage.ning.com/topology/rest/1.0/file/get/2177540284?profile=original&amp;width=240&amp;height=180" width="240" height="180" alt="Thumbnail" /><br /> </a><br />End stage dilated cardiomyopathy (DCM) is a known complication of Duchenne muscular dystrophy. DCM leads to end stage heart failure and the premature death of patients with Duchenne. Given recent advances in respiratory care, heart failure is the cause of death in more than 40% of patients with Duchenne.<br /> <br /> A "ventricular assist device (VAD)" is a mechanical pump that is connected to the heart in order to support its function. The type of device that would be considered in individuals with Duchenne/Becker is a "left ventricular assist device (LVAD)". It works by assisting the ill heart in pumping blood from the left ventricle to the body. Generally VAD therapy is used as a "bridge to transplant" (after the heart is too weak to support the body and until a donor heart for transplant is found). In some patients, a VAD could be used as "destination therapy." What this means is that the device is implanted in an individual who is not a transplant candidate with the intent that the device will be in place for the remainder of their life.<br /> <br /> Due to progressive skeletal myopathy and limited functional capacity, cardiac transplantation has been significantly limited for patients with Duchenne. Recent advances utilizing LVAD's as "destination therapy," rather than as a bridge to heart transplant, are being explored as a new therapeutic option for this patient population<br /> <br /> LVAD's have now been placed in three patients worldwide. The first LVAD recipients were two adolescent boys in Italy and, more recently a 29-year-old man at Cincinnati Children's Hosptial Medical Center in the US. While each of these young men is reportedly doing well, the surgical procedure and life post-operatively is not without significant risk of complications.<br /> <br /> Part 1 - Monitoring heart disease in Duchenne and carrier moms/daughters<br /> <a href="http://community.parentprojectmd.org/video/webinar-monitoring-heart-disease-in-duchenne-and-carrier-moms">http://community.parentprojectmd.org/video/webinar-monitoring-heart-disease-in-duchenne-and-carrier-moms</a><br /> <br /> Part 2 - Interventions<br /> <a href="http://community.parentprojectmd.org/video/cardiac-webinar-series-part-2-interventions">http://community.parentprojectmd.org/video/cardiac-webinar-series-part-2-interventions</a> Webinar: Cardiac Interventions tag:community.parentprojectmd.org,2012-12-05:1187424:Video:162524 2012-12-05T18:26:42.351Z PPMD http://community.parentprojectmd.org/profile/parentprojectmd <a href="http://community.parentprojectmd.org/video/cardiac-webinar-series-part-2-interventions"><br /> <img alt="Thumbnail" height="180" src="http://storage.ning.com/topology/rest/1.0/file/get/2177539711?profile=original&amp;width=240&amp;height=180" width="240"></img><br /> </a> <br></br>Cardiac care and cardiomyopathy remain major areas of interest and concern for all people with Duchenne. While advances in respiratory care have improved respiratory outcomes, dilated cardiomyopathy and heart failure remain the leading cause of death in… <a href="http://community.parentprojectmd.org/video/cardiac-webinar-series-part-2-interventions"><br /> <img src="http://storage.ning.com/topology/rest/1.0/file/get/2177539711?profile=original&amp;width=240&amp;height=180" width="240" height="180" alt="Thumbnail" /><br /> </a><br />Cardiac care and cardiomyopathy remain major areas of interest and concern for all people with Duchenne. While advances in respiratory care have improved respiratory outcomes, dilated cardiomyopathy and heart failure remain the leading cause of death in Duchenne. Q&A with Sarepta tag:community.parentprojectmd.org,2012-10-25:1187424:Video:161135 2012-10-25T16:17:19.893Z PPMD http://community.parentprojectmd.org/profile/parentprojectmd <a href="http://community.parentprojectmd.org/video/webinar-with-sarepta-eteplirsen"><br /> <img alt="Thumbnail" height="180" src="http://storage.ning.com/topology/rest/1.0/file/get/2177539683?profile=original&amp;width=240&amp;height=180" width="240"></img><br /> </a> <br></br>On October 23, 2012, PPMD hosted a webinar with Sarepta to discuss of the 48 Week dystrophin and 6-minute walk test (6MWT) data from the Phase IIb extension study in Duchenne as well as next steps for the eteplirsen program. Chris Garabedian, President and CEO of Sarepta Therapeutics presented the data and answered submitted… <a href="http://community.parentprojectmd.org/video/webinar-with-sarepta-eteplirsen"><br /> <img src="http://storage.ning.com/topology/rest/1.0/file/get/2177539683?profile=original&amp;width=240&amp;height=180" width="240" height="180" alt="Thumbnail" /><br /> </a><br />On October 23, 2012, PPMD hosted a webinar with Sarepta to discuss of the 48 Week dystrophin and 6-minute walk test (6MWT) data from the Phase IIb extension study in Duchenne as well as next steps for the eteplirsen program. Chris Garabedian, President and CEO of Sarepta Therapeutics presented the data and answered submitted questions.