August 1, 2019

Recording of Conference Medical Presentations Now Available

This year, for the first time, the Foundation livestreamed the medical presentations that were featured in the Annual Conference general session. Now, the recordings of these presentations are available – for free – through the Foundation’s website

The presentations that comprised the general session were:

  • 38 Years of Research = 38 Years of Added Life Expectancy - Reed E. Pyeritz, MD, PhD, William Smilow Professor of Medicine and Professor of Genetics, Perelman School of Medicine at the University of Pennsylvania
  • Aortic Surgery - Joseph S. Coselli, MD, Professor, Vice-Chair, Department of Surgery & Chief, Cardiothoracic Surgery, Baylor College of Medicine
  • FDA Warnings and Recalls - Shaine Morris, MD, Pediatric Cardiologist, Texas Children’s Hospital
  • Personalized Medicine - Dianna Milewicz, MD, PhD, Professor, Division Director, Medical Genetics, Vice Chair Medicine, University of Texas
  • Vascular Ehlers-Danlos Syndrome - Peter Byers, MD, Professor of Pathology and Medicine, UW Medical Center
  • The Effects of Exercise on the Aortic Root - Mitra Esfandiarei, PhD, Associate Professor of Biomedical Sciences, Midwestern University, USA, and Adjunct Professor of Pharmacology, University of British Columbia, Canada
  • Backpack Health: Good for You and the Marfan and Related Conditions Community - Michael Shapiro-Barr, Backpack Health

Lisa Altmose, of Steubenville, OH, was one of the hundreds who watched the livestream. She tweeted: “Never going to get a chance to go to a conference, so THANK YOU for providing this opportunity to view the General Session!”

With the recordings, even more people can access the vital information shared by the experts at the Annual Conference, many of whom are on the Foundation’s Professional Advisory Board.

In addition to the general medical session, the Annual Conference offers small group break-out sessions on medical and quality of life issues, many networking and social opportunities, and special programs for children, teens, and young adults. There’s also a health fair, where attendees can consult with medical experts on Marfan and related conditions to get their personal diagnosis and treatment questions answered. And, this year, a special track was added for those with Vascular Ehlers-Danlos syndrome and Loeys Dietz syndrome. 

To view the recordings, please click here.

The next Annual Conference will be July 9-12, 2020, in Boston. Registration will be available in early 2020.