Researchers, Dr. Bart Loeys and Aline Verstraeten, PhD discuss biomarkers and their new research on a novel biomarker for thoracic aortic aneurysm and dissection.
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In this webinar, Dr. Eagle will share highlights from the 2022 GenTAC Aortic Summit, held in Paris in April. The studies presented there address Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions.
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This panel discussion led by Gretchen MacCarrick, MC CGC of Johns Hopkins University, and members of the Loeys-Dietz Syndrome Foundation Board, answers common questions about living with and treating LDS.
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Dr. Kim Eagle, Director of the Frankel Cardiovascular Center at the University of Michigan and a Board Advisor for The Marfan Foundation, addresses the latest questions about COVID-109 for our community of people with Marfan, Loeys-Dietz, and VEDS.
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In this webinar, three doctors from Cleveland Clinic - Dr. Ken Zahka, Dr. Vidyasagar Kalahasti, and Dr. Eric Roselli - provide guidance for families. They explain why it's important to switch from pediatric to adult doctors and offer data as well as real-life suggestions for making this transition easier.
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Living with risk is part of life with an underlying aortic condition. In this webinar, presented by the GenTAC Alliance, a division of The Marfan Foundation, two cardiologists and a licensed professional clinical counselor provide medical information about the risks. The data they shared showed how people can enjoy their life without constant worry and anxiety, even though the risk is real.
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From long, flexible limbs to surgery scars, living with the physical markers of Marfan, Loeys-Dietz, and related conditions can weigh on a person's body image. This discussion focuses on body image questions relating to Marfan and Loeys-Dietz but can apply to many conditions presenting with external features.
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On Monday, November 8 we heard a COVID-19 update for our community. Dr. Kim Eagle, University of Michigan, who reviewed the latest COVID -19 research for the American College of Cardiology, discussed the latest developments on variants, vaccines for children, boosters, and more.
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In this webinar, parents can learn some of the basic medical information related to Marfan and Loeys-Dietz, especially as it related to the heart and blood vessels. In addition, we addressed issues that are non-medical, including learning issues and psychosocial challenges.
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People in the Marfan, LDS, VEDS, and related conditions community want to know about securing life insurance. In this webinar, we feature an expert who can answer your questions about securing life insurance when you have a connective tissue condition.
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Dr. Alan Braverman, Washington University in St. Louis, and Dr. Mary Sheppard, University of Kentucky, provide guidance on physical activity and exercise when you have Marfan, LDS, VEDS, or another genetic aortic or vascular condition. They are joined by three members of our community – Allen Tucker (Marfan), Samantha Stallings (LDS), and Morgan Jozwiak (mom of a young boy with VEDS – who share their first-hand experience.
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This webinar, which is part of our quality of life programming, features dads who have Marfan, Loeys-Dietz, or VEDS and/or have children with one of these conditions. They provide valuable insights into how they handle various situations, make certain decisions, and, like any parent, be the best they can be. These dads assert that you are not your diagnosis.
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This panel presentation digs into practical ways you can get the most out of your doctor visits. This discussion looks at what you can prepare ahead of time and ways you can advocate for yourself during a visit, among other steps you can take to make sure you get the most out of each visit.
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What is life like after aortic surgery? Two young adults with Marfan syndrome, Dominga Noe and Victoria Falcone-Pawar, and two young adults with Loeys-Dietz syndrome, Lauren Atherton and Peter Donato, share their experiences. Dr. David Liang, a member of The Marfan Foundation Professional Advisory Board, from Stanford and Hoag, provides the medical perspective.
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Susan Leshen, LCSW, leads a session that teaches you how to practice mindfulness. For more information, please contact Susan at sleshen@marfan.org.
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