Connective Issues Fall 2024

Welcome to Connective Issues! If I had to summarize the spirit of our most recent months at the Foundation, three words come to mind: Global Community Building . Whether I am thinking about our Virtual Global Conference that took place earlier this summer, the recent meetings we convened in Europe, Camp Victory for Kids and Camp Victory for Families, symposiums,

The Marfan Foundation is a nonpro fi t 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.

or our latest Walk for Victory events in Cleveland, St. Louis, and the inaugural Salt Lake City Walk, we have united experts and community members globally to learn and laugh together. We convened Living Better with Marfan, Loeys-Dietz, and VEDS symposiums in Oslo and London for the fi rst time to rave reviews and our joint meeting of GenTAC and IRAD in Tromsø, Norway, brought together some of the most engaged physicians and scientists from around the globe to collaborate on behalf of advancing care for our communities. Because of your support, we have recently been able to award fi ve new research grants totaling $500K to scientists whose work holds the potential to advance treatment, quality of life, and longevity. And since 1986, we have funded 176 research grants. Our recent gala fundraising events broke records, and in this issue, you can read a detailed recap of how their success took shape, thanks to the generosity of our community. So much of our magic happens thanks to our volunteer/ sta ff partnership and the extraordinary leadership volunteers who dedicate so much of their time to advancing our mission in countless ways. In this issue, we celebrate the addition of a number of these energized board and committee members. Thank you to every volunteer who makes a di ff erence for the Foundation every day. We appreciate the rich diversity of the communities we serve. And we are fortunate to have dedicated medical providers and scientists working tirelessly to make life better and longer for people everywhere with genetic aortic and vascular conditions. In closing, thank you for the unique contributions you are making to the Foundation by staying connected to our mission. With appreciation,

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Fall 2024 VOLUME 43 | 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: James from North Carolina soars on the climbing wall at Camp Victory for Kids in Georgia held in August. Read more about Camp Victory on page 14.