Join the Walk for Victory movement! 

Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. 

Together, we raise awareness and help families get the best medical care from leading experts. 

Together, we help fund events and programs that improve the lives of our community: support groups, symposiums, conferences, Camp Victory for kids, life-saving research, and more! 

YOU GET IT…

Let’s do it TOGETHER!

Join the Walk for Victory movement! 

Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. 

Together, we raise awareness and help families get the best medical care from leading experts. 

Together, we help fund events and programs that make life better for our community: support groups, symposiums, conferences, Camp Victory for kids, life-saving research, and more! 

YOU GET IT…

Let’s do it TOGETHER!

Invitiamo i pazienti e le loro famiglie a partecipare a un simposio virtuale con presentazioni, in italiano, dedicate alle sindromi di Marfan, Loeys-Dietz, Ehlers-Danlos vascolare (VEDS) e Stickler. Gli interventi si concentreranno sull’esercizio fisico e l’attività motoria, sull’immagine corporea e l’autostima, sulla pianificazione familiare e su altri temi di carattere medico. Inoltre, è previsto un panel in cui alcune persone condivideranno le proprie esperienze di vita personali con queste condizioni, raccontando ciò che le ha aiutate nel loro percorso.

La Marfan Foundation offre questa opportunità formativa a titolo gratuito. Per ottenere il collegamento Zoom, è richiesta la registrazione.

Join the Genetic Aortic Network on April 21 at 11:00 a.m. ET for a webinar on highlights from “Recommendations for Design, Execution, and Reporting of Studies on Experimental Thoracic Aortopathy in Preclinical Models” (Arteriosclerosis, Thrombosis, and Vascular Biology, 2025).

During this session, Alan Daugherty, PhD, DSc (University of Kentucky, USA), Scott LeMaire, MD (Geisinger, USA), and Hisashi Sawada, MD, PhD (University of Kentucky, USA) – three of the paper’s authors – will explore best practices for choosing and describing murine models of thoracic aortopathy, optimizing experimental conditions, and ensuring robust reporting standards.

Attendees will gain practical insights into study design, model selection, data interpretation, and how these recommendations aim to accelerate translation of preclinical findings into therapies.

This webinar is free to attend, but registration is required.

Join the Walk for Victory movement! 

Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. 

Together, we raise awareness and help families get the best medical care from leading experts. 

Together, we help fund events and programs that make life better for our community: support groups, symposiums, conferences, Camp Victory for kids, life-saving research, and more! 

YOU GET IT…

Let’s do it TOGETHER!

Join the Walk for Victory movement! 

Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. 

Together, we raise awareness and help families get the best medical care from leading experts. 

Together, we help fund events and programs that make life better for our community: support groups, symposiums, conferences, Camp Victory for kids, life-saving research, and more! 

YOU GET IT…

Let’s do it TOGETHER!

The Memorable Moments Luncheon is a special event designed to highlight and celebrate significant programs that make a difference in the community. Led by Co-Chairs Alix Jennings & Barbara Lerman, the luncheon will highlight three key programs: Camp Victory, The Marfan Foundation Annual Conference, and The Sydney Lerman Hospitality Program. This luncheon aims to bring together supporters, volunteers, and stakeholders to share the impact these initiatives have had and continue to have in the community. Throughout the event, attendees will learn about the successes, stories, and future goals of these programs while enjoying a memorable and inspiring gathering. The luncheon promises to be an opportunity for connection, reflection, and hope, as well as a way to support and celebrate these important causes.

The Marfan Foundation is pleased to offer Empowered Relief®️, a free 2.5-hour pain management course to our community members experiencing chronic pain. Instructor Kyle Davis, PhD, will lead this evidence-based program developed at Stanford University, focusing on reducing pain intensity and enhancing overall well-being through pain education, mindfulness, and self-regulatory skills like relaxation and cognitive reframing. 

Join the Walk for Victory movement! 

Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. 

Together, we raise awareness and help families get the best medical care from leading experts. 

Together, we help fund events and programs that make life better for our community: support groups, symposiums, conferences, Camp Victory for kids, life-saving research, and more! 

YOU GET IT…

Let’s do it TOGETHER!