Connective Issues Winter 2024

MEDICAL EDUCATION: Expanding Alliances and Partnerships

New in 2023, the Foundation became a Charity Partner with runDisney, o ff ering Team Victory participants the magic of Disney combined with running options for its Disney Wine & Dine Half Marathon which was held November 3-5. Runners could choose from a 5K, 10K, or half marathon while enjoying Disney character sightings and entertainment. Congrats to the Disney runners who raised more than $10,000. • Jared & Jordan • Andrew Karistinos • Isabella Montemagno • Tyler Mott • Dominga Noe • Joseph Allen • LukeWard

It is important for people with genetic aortic and vascular conditions to see medical professionals who can identify, understand, and know the best treatment options for these conditions as they can be complex and impact multiple body systems. To better equip doctors who do not have extensive experience with Marfan, Loeys Dietz, and VEDS, the Foundation works year round on initiatives to

 Front row: Tammy Kegley, Tomas Martin, MD, and Jill Hendrickson, MS, MSSW, LCGC, from UF Health Aortic Disease Center, at their First International Aortic Symposium. Back: Long-time volunteer, Chris Idhe, of Cocoa Beach, FL.

educate doctors and other healthcare providers on the latest management guidelines to help ensure better care for patients. This is a primary focus for the Foundation’s GenTAC Alliance, the division that brings together clinicians and researchers interested in genetic aortic conditions from all over the world. In November 2023, we launched a new website for GenTAC, GenTACAlliance.org , that highlights best practices, clinical management videos, and registries on all forms of genetic aortic and vascular conditions. In addition, it provides key publications, continuing medical education (CME) opportunities, and other news that is relevant to these conditions. The Foundation also collaborates with hospital partners on CME programs related to these conditions. In December, the Foundation connected with more than 150 healthcare providers at the University of Florida’s First International Aortic Symposium in Orlando. Also last year, the Foundation participated in CME programs at Cleveland Clinic and the University of Pittsburgh. Both of these events were hybrid, reaching not only those who were there in person but hundreds more who participated virtually. “The Marfan Foundation and the GenTAC Alliance partner with experts in genetic aortic conditions to communicate knowledge and inform best practices worldwide,” said Dr. Alan Braverman, Washington University School of Medicine and member of the Foundation’s Board of Directors and Professional Advisory Board. “Educating doctors and other health care professionals about Marfan syndrome and related conditions saves lives. I am proud to be a part of this important mission.”

 Luke Ward ran the 5K in honor of his son, Dion (shown), age 12, who has Marfan syndrome.

In December, two moms with children a ff ected by VEDS, Monica Kile and Morgan Jozwiak, made the commitment to join forces and run a relay in the California International Marathon, raising awareness and over $4,000 in donations to help The VEDS Movement. “Morgan and I share a passion for running, but beyond that, we are kindred spirits - mothers to children with VEDS,” said Monica. “We both know from personal experience how awareness canchange

outcomes. It is empowering to contribute in some small way to both research and awareness of VEDS.”

 Morgan and Monica in front of the California State Capitol building following the California International Marathon.

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Winter 2024