Connective Issues Spring/Summer 2026

The Marfan Foundation drives research, education, and support—and builds community—to improve outcomes, save lives, and empower all people to thrive who are living with Marfan, Loeys-Dietz, Vascular Ehlers Danlos syndromes and related genetic aortic and vascular conditions. We work tirelessly to advance research; educate patients and families, medical professionals, and the general public; and provide a supportive community for all affected by these conditions. Learn more and get involved at Marfan.org. CONNECTIVE ISSUES SPRING/SUMMER 2026 VOLUME 45 | NUMBER 2 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 Officer Contributing Writer: Olivia Abel Foundation Marketing Communications Director THE MARFAN FOUNDATION 22 MANHASSET AVENUE PORT WASHINGTON, NY 11050 516-883-8712 | 800-8-MARFAN MARFAN.ORG

Greetings, We are so glad you have picked up or clicked through to the latest issue of Connective Issues , the Marfan Foundation’s flagship magazine. Whether you have been part of the Foundation family for many years or are newer to our community, we’re really glad that you are with us. We are amid another exciting season at the Marfan Foundation. We are getting ready for our Global Virtual Conference, which takes place 6/15 – 6/18. Our virtual conference is held every other year to help ensure access to our resources both domestically and around the world. We look forward to seeing you there, virtually. Here are a few of the “can’t miss” stories within the pages of this Connective Issues : • We’re celebrating our 45 th anniversary by highlighting 45 special moments in the Foundation’s history. Which milestones do you remember? What is your greatest hope for the future? Check out the story. • We’ve updated our Physical Activity Resource to center on shared decision-making between healthcare professionals and community members and choices focused on individual situations rather than broad general advice—both major shifts. • We often talk about Type A aortic dissections, but the reality is many members of our community experience dissections and ruptures outside that area of the aorta. Don’t miss the story about these less-frequently-discussed but critical-to-understand dissections. Awareness is key to thriving! • Transitioning from being a child living with family to a young adult living independently is a leap that comes with exciting new possibilities and a fair share of challenges. When an individual is living with a genetic aortic or vascular condition, ordinary changes can be compounded by the need to take on additional responsibility for one’s own healthcare roadmap. We’re sharing tips—thanks to Cincinnati Children’s Hospital— that we hope will prove helpful during this important time of life. In the 45 years since the Marfan Foundation began in 1981, we have seen tremendous medical advancements, resulting in many more community members experiencing comparable longevity to the general population with appropriate medical management. We’re working to achieve a world where such progress is possible for every genetic aortic or vascular condition. Your investment in research, education, support, and programming makes our ability to continue to help countless people possible. Thank you! Onward!

Michael L. Weamer, President & CEO

ON THE COVER : Team Belmont came together at the Walk for Victory in Nashville to honor the life of Kayley Tigges. Organized by her close friend and college roommate, Keira Maupin (center), the team raised awareness and supported those living with Loeys-Dietz and related conditions, and their loved ones.