Connective Issues Spring 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.

May is Mental Health Awareness Month, which is the perfect time for us to announce the expansion of our website and mental health o ff erings to our community. We recognize the important role that mental health plays in overall well-being, and we are committed to providing resources and support to all those in need of it. I hope you will explore our expanded webpage and take advantage of the services and support we o ff er to improve your quality of life.

We all know that having a sense of community is essential to good mental health, and spring has provided numerous opportunities to connect through our Walk for Victory and HeartWorks events as well as our regional symposia. Thanks to the dedication and hard work of our community volunteers and hospital partners, we can bring the community together and raise essential funds to further our mission. We are also providing an opportunity this summer for people from across the country to gather as a community to connect and learn at Conference, July 13-16, in Chicago. We have planned a fantastic educational program led by many of the top medical experts in Marfan, Loeys-Dietz, VEDS, and related genetic aortic and vascular conditions. There will also be many opportunities to meet others impacted by the same condition as you and/or your family. I hope you are planning to join us. Finally, I want to express my deep appreciation for your ongoing support of the Foundation. Together, we are making a di ff erence and improving the lives of those a ff ected and their families. I look forward to achieving greater success as we continue to grow as a community here in the US and abroad.

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Spring 2023 VOLUME 42 | NUMBER 2 Connective Issues is the newsletter of The Marfan Foundation. It is published three times per year.

Inquiries should be addressed to: Publicity@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: Discover how some in our community like Finnegan Chu successfully navigate fulfilling their passions while living with a connective tissue condition. Read the article on page 6.