Connective Issues Winter 2026

The Marfan Foundation is a nonprofit organization that saves and improves lives while creating community for all individuals with genetic aortic and vascular conditions, including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. We work tirelessly to advance research, serve as a resource for families and healthcare providers, and raise public awareness so everyone with genetic aortic and vascular conditions can live their best life. CONNECTIVE ISSUES WINTER 2026 VOLUME 45 | NUMBER 1 Connective Issues is the newsletter of the Marfan Foundation. It is published three times per year. Inquiries should be addressed to: brandcomms@marfan.org This issue of Connective Issues is made possible through a grant from The Chu and Chan Foundation. Connective Issues is produced by: Executive Editor, Lead Writer: Susan Benvenuti Foundation VP, Integrated Marketing Communications Visual Consultant: Kim Fischer Graphic Designer Contributing Strategist: April Dawn Shinske Foundation Chief Communications and Marketing O ffi cer Learn more and get involved at Marfan.org.

We exist because of you. As we begin a new year, I’m reflecting on what makes our community so special. Your generosity. Your time. Your advocacy. Your belief that everyone deserves medical answers, support, and hope. You make the work of the Marfan Foundation possible—and we are grateful. In these pages, you’ll see some great examples of the big impact you made in 2025. You’ll meet Ozzy and his family and learn more about his medical journey, including a heart transplant. You’ll read about important advances in research, such as work led by Dr. Julie De Backer and team. These discoveries don’t happen in isolation. They are fueled by our donors who believe in science, progress, and a future where better quality of life, longevity, and even cures are in reach. That same spirit of generosity shines through in community-led e ff orts like the Borracho Pescador fishing tournament, where Neil turned love for his child, Townes, into action that advances research, education, and support for families everywhere. You’ll also learn how Julian used our new VEDS911.com tool to help his wife during a medical emergency—a powerful example of how shared knowledge and the right resources can be lifesaving. We look forward to seeing you in-person and virtually during the coming year. Included is a robust calendar of upcoming events. As we begin 2026 together, remember: the generosity of our Marfan, Loeys-Dietz, VEDS, and Stickler communities drives discovery, delivers education, and builds a stronger, more connected Foundation family. From all of us at the Marfan Foundation, thank you for being here, for caring so deeply, and for helping ensure that together, we continue to Know. Connect. Thrive. With appreciation,

Michael L. Weamer, President & CEO

THE MARFAN FOUNDATION 22 MANHASSET AVENUE PORT WASHINGTON, NY 11050 516-883-8712 | 800-8-MARFAN MARFAN.ORG

ON THE COVER : Townes, who lives with Marfan syndrome, and his best buddy, Trout. “Townes’ dog Trout is always by his side, and for me, I could not be prouder of how brave and tough my son has been at such a young age all while remaining positive and happy,” said dad Neil. Learn more about Neil, Townes, and the fishing tournament that supports the Marfan Foundation on pages 6 and 7.