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!

Insights from the LDS Natural History Study at NIH: Audiology and Otology offers an in-depth look at hearing and ear-related findings emerging from the Loeys-Dietz Syndrome (LDS) Natural History Study conducted at the National Institutes of Health. This webinar will be led by NIH experts Jeffrey Kim, MD, and Julie Christensen, M.S., who will share current insights into audiology and otology as they relate to individuals living with LDS.

Participants will learn about how hearing and balance may be affected in LDS, the types of assessments used in the Natural History Study, and what researchers are discovering about patterns, prevalence, and clinical implications. The presenters will also discuss why monitoring auditory and otologic health is important for individuals with LDS and how research findings may help inform future care and awareness. This session is designed for individuals with LDS, caregivers, advocates, and clinicians seeking a deeper understanding of the auditory aspects of the condition and the role of ongoing research at NIH.

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.