Connect

A year after UVA Health is designated as Virginia’s only Marfan Foundation Care Center — recognizing its comprehensive, multidisciplinary care for individuals with Marfan syndrome and related connective tissue disorders — the momentum continues!

In 2025 and 2026, UVA Health held Aortic Symposiums, during which patient feedback consistently highlighted a desire for greater engagement and community connection beyond the clinical setting. Those conversations helped shape a new opportunity to expand outreach and support for patients and families across the region.

Leading the Way

Building on that feedback, Bernie Ammons, MSN, RN, VA-BC, then-Clinical Program Coordinator, Aortic Center and Vascular Surgery, proposed bringing The Marfan Foundation’s Walk for Victory to Charlottesville. With support from Heart and Vascular leadership, the initiative focused on strengthening UVA Health’s partnership with the foundation while raising awareness and expanding support for individuals living with inherited connective tissue disorders.

That vision became reality on June 27, when UVA Health hosted its inaugural Walk for Victory at Darden Towe Park in Charlottesville. The event exceeded expectations — raising more than $44,000 and bringing together patients, families, healthcare providers, researchers, and community supporters for a day of education, connection, and hope.

“We're thrilled to welcome more than 120 in-person attendees, with patients and their families traveling from Washington, D.C., South Carolina, and as far away as Utah,” says Randy Ramcharitar, MD (below, left), Director, Heritable Aortopathy Program.

The family-friendly event featured a quarter-mile walk, educational resources, children’s activities, tie-dye stations, face painting, music, and lunch. It created a relaxed environment in which patients and families could connect directly with the multidisciplinary care team that supports them throughout their healthcare journey.

Sense of Community + Institutional Excellence

Also leading the way: UVA Health team members Behzad Farivar, MD (above, right), Director, UVA Health Aortic Center; Julia Lovin, MD, Pediatric Cardiology; Dacre Knight, MD, Director, UVA Health Ehlers-Danlos and Hybermobility Center; and genetic counselors including Kaitlyn Amos, MS, LCGC, Cardiovascular Genetics, and Matthew J. Thomas, MSGS, Pediatrics Genetics, UVA Health Children's.

They highlighted UVA Health’s collaborative, lifespan-based approach to care and reinforced our commitment to improving awareness, access, and support for individuals living with inherited connective tissue disorders.

“Not only did this event help build a strong sense of community among our patients, but it also reinforced our institutional excellence,” Dr. Ramcharitar explains. “It further establishes UVA Health as the only healthcare system in Virginia recognized by the Marfan Foundation to provide comprehensive care for Marfan syndrome, Loeys-Dietz syndrome, vascular Ehlers-Danlos syndrome, and related conditions.”

Caring for the Whole Patient

“It's an amazing day! Seeing so many patients, families, friends, volunteers, and colleagues come together is incredibly rewarding,” adds Dr. Farivar. “The energy and sense of community are truly special. This is a real team effort, and it’s exciting to see what we can accomplish when we all work together!”

The Walk for Victory reflects UVA Health’s commitment to caring for the whole patient —not only through exceptional clinical care — but also by building meaningful partnerships and creating opportunities.

Organizers hope the inaugural event marks the beginning of an annual tradition that will continue to strengthen relationships while increasing awareness of specialized care available at UVA Health.