Connective Issues Fall 2023

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. We will not rest until we have achieved victory.

Greetings, Whether I am looking back to the amazing programs and camaraderie we enjoyed at Conference 2023 in Chicago or looking ahead to the January 2024 Virtual Spanish-Language Summit, I am inspired by the immense commitment our diverse community members, expert healthcare providers, world-class researchers, outstanding leadership volunteers, and talented sta ff bring to every aspect of the Foundation’s mission.

We have so much to be proud of and so much to look forward to in the remainder of 2023, well into 2024 and beyond. In the coming year, we will also have 30 in-person events around the country — more than at any time in our history — including symposiums, Walks, and special events. This year we had 68 participants who had 331 multidisciplinary appointments at our Health Fair. In 2024, we will o ff er our traditional Health Fair in conjunction with a medical and science update featuring world experts in Marfan, Loeys-Dietz, and VEDS, along with a Victory Party. Additional details and location will be announced later this fall. Core to advancing our mission — especially when it comes to reaching rural, diverse, and traditionally under-resourced people and communities — we are planning a Virtual Global Conference June 20–22, 2024, with presenters across time zones engaging our communities in multiple languages. Our last Virtual Conference had a record 3,000 participants from 75 countries. The format is critical to bringing the Foundation’s best education, support, and hope to our community in every corner of the nation and around the world, and vastly increases access to our o ff erings for those who might otherwise not find connection due to multiple real life barriers (including di ffi culty with access to transportation, medical inability to travel, and personal financial constraints). Then, we will return to Atlanta for an in-person Conference July 10-13, 2025. Conference 2025 will again be hosted by our friends at Children’s Healthcare of Atlanta and Emory at their new medical campus. We hope to see you at our upcoming local and regional events including our symposiums in Pittsburgh, Los Angeles, Austin, Portland, and more, and our Walk for Victory events in 22 cities reaching over 5,000 members of our community. We’ll have special post-Walk gatherings planned for VEDS in Houston, Loeys-Dietz in Chicago, and at several locations for Marfan. Enjoy this edition of Connective Issues . Happy reading!

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Fall 2023 VOLUME 42 | 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.

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: Dr. Hal Dietz, a member of our Professional Advisory Board and a presenter at Conference, attended a Loeys-Dietz mixer and met friends Elina, Georgie, and Ariele.