Connective Issues Fall 2025

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 FALL2025 VOLUME 44 | NUMBER 3 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.

I hope you enjoy the autumn 2025 editionof Connective Issues ! As I reflect on the past fiscal year and the amazing experience of the Foundation’s 40 th Conference, we have much to celebrate. Our community shined, our volunteer-sta ff partnerships continued to soar, and collectively we empowered people everywhere with the tools and support to live their best lives. Nearly 700 people registered for our 40 th Conference, and we were proud to o ff er 180 scholarships, which was the highest number of any time in our history. Read more about Conference and the Health Fair in this issue.

Our supporters powered the Foundation in bold new ways, and I am very pleased that for the first time ever we reached a high of 82 cents of every dollar donated going directly to fuel our mission. This is far above the sector standard of 70 cents and speaks to the financial stewardship of the Foundation. Likewise, we are proud of our new look and feel. I hope you enjoy our brand refresh, updated mission statement and vision, and new tagline: Know. Connect. Thrive. These changes are all about you – we’re here for you not just in terms of powering essential research and medical treatment, but also to provide you with resources and build community so that you can thrive in the ways that matter most to you. Other highlights in this edition of Connective Issues include: • Welcoming new members to our Board and PAB and fostering the volunteer-sta ff partnerships that drive all we do • The latest on our game-changing research grants • Learning more about Stickler syndrome • A visit to Terumo Aortic • Your impact through Camp Victory • A look-ahead to our Spanish-Language Summit in January We have many in-person events coming up around the country and in several corners of the world. To find events near you, visit Marfan.org/ calendar. Wishing you good health and happiness.

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: The many faces of our community! Leading up to and during our 40 th Conference, community members submitted their photo or had it taken while at Conference, resulting in this beautiful mosaic. Though each of us is unique, we are united by being a part of the same community.