Connective Issues Winter 2024

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, As we step into a new year, I am proud of the incredible strides we have accomplished together as a community, and so very grateful for each of you who make life-changing progress possible. Thank you! You’ll find highlights of your transformational impact and the Foundation’s recent work on page 6 of this issue. Know that you make all the di ff erence in advancing research, education, community-building, support, and more.

In 2023, we raised awareness and fostered community by stepping out for 23 Walk for Victory events enjoyed by more than 5,500 people. If you haven’t experienced a Walk for Victory yet, I encourage you to join us in 2024. Walk for Victory isn’t really about walking, it’s about coming together with people who get it. Walk for Victory unites us, helps foster friendships among those who truly understand the journey, and provides an opportunity to connect with expert medical professionals in an informal setting. A major focus this past year that we will carry forward is shining a spotlight on the critical importance of supporting mental health and well-being. We launched a dedicated webpage aimed at improving psychological, emotional, and social wellbeing within our community. Monthly virtual support groups, detailed on page 5, provide additional avenues for connection and support. Our support groups are financially free and commitment-free. Check out our online calendar and consider trying one out in 2024. And, with your help, we began to expand our international outreach in 2023—creating a new position, Chief Global and Business Development O ffi cer and making sure Marfan.org is now accessible in 25 languages. Saving lives and empowering people around the world to foster their best quality of life marks a crucial step forward in advancing our mission together. We’re looking ahead to Marfan Awareness Month this February, with a special focus on hearing and sharing your authentic personal stories. Your voice matters! You are the heartbeat of the Foundation’s progress, and we are so grateful. Best wishes for a happy and healthy 2024!

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Winter 2024 VOLUME 43 | NUMBER 1 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: Jerome from North Carolina, pictured with his wife, Leah, and children, Josiah (5) and Alani (2), shares his story of overcoming years of insecurities and self-doubt through education and community support. Read more on page 4.