Connective Issues Spring/Summer 2025

Welcome to the Spring/Summer 2025 edition of Connective Issues ! Priority 1 for everyone at the Foundation is enthusiastically focused on getting ready for our in-person Conference, July 10–13, in Atlanta. As always, we will convene medical experts alongside our community members for both learning and social engagement. For more information or to register for our milestone 40 th Conference, visit Marfan.org/conference.

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 SPRING/SUMMER 2025 VOLUME 44 | 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 Learn more and get involved at Marfan.org.

In addition to a Conference preview, stories in this issue highlight what we can accomplish together through our outstanding volunteer staff partnerships. Our end goal is to help people learn more about their conditions, connect with the community, and thrive in ways they find most meaningful. Don’t miss: • A story about how we continue to expand our Spanish-language offerings—now including a support group and updated Spanish language educational videos, and planning for our 5 th Spanish Language Summit on January 24, 2026. • A feature about Alaina, who has learned over a lifetime how to find their best tools for thriving alongside Marfan syndrome. • A recap of our amazing 10 th Houston Walk for Victory where our entire community shined, and our VEDS community commemorated the 5 th anniversary of the VEDS Movement. • A story about why the Green family finds it absolutely essential to support hopeful futures. • A piece focused on how “routine” visits for eye exams can lead to the diagnosis of genetic aortic and vascular conditions. We welcome a community very familiar with eye-related conditions to the Foundation: people living with Stickler syndrome. Stickler syndrome is a genetic condition that affects connective tissues that support and give structure to organs in the body, primarily in the face, ears, eyes, and joints. Many thanks to Connective Issues editor Susan Benvenuti, VP of Integrated Marketing and Communications, for making every issue of CI uniquely special and to everyone who contributes to the success of this publication. Looking forward to seeing many of you at Conference as well as welcoming new members of the Stickler syndrome community. Onward….

Michael L. Weamer President & CEO

ON THE COVER: “Every child deserves the chance to live a full and vibrant life, and for my son, that chance lies in the groundbreaking research and support your generosity can provide. Your donation isn’t just a contribution, it’s a lifeline. It’s the hope for better treatments, the promise of improved quality of life, and the possibility of a brighter future for those affected by Marfan syndrome.” - Amanda Justen

The Justen family from Illinois is one of the faces of the Foundation’s Membership Campaign, a major fundraiser taking place through June. Become a member or renew now at Marfan.org/membership.

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

Watch the Justen family’s story on our YouTube Channel or scan the QR code.