Connective Issues Winter 2025

Greetings, As we reflect on 2024, I am filled with gratitude for the incredible accomplishments we achieved together. From convening global experts in Tromsø this summer to hosting our Virtual Global Conference, from funding critical research grants to reaching over one million people with our educational materials and programs, every e ff ort has made a profound impact.

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.

Our awareness and action months, inspiring walks, and gala events—along with the personal ways you’ve raised awareness in your communities—have helped more individuals enjoy longer, healthier lives. Together, we’ve made 2024 a truly remarkable year for the Marfan Foundation. Looking ahead, 2025 is shaping up to be our best year yet, thanks to the unwavering support of our amazing community. One of the highlights will be Celebrating the Foundation’s 40 th Conference in Atlanta , in collaboration with Children’s Healthcare of Atlanta and Emory Healthcare. Mark your calendars for an enriching experience from July 10 (kicking o ff with our Health Fair) through July 13, followed by Camp Victory in Georgia. More details tocome! I’m thrilled that you stay connected with all things Foundation through Connective Issues . In this issue, we celebrate some of the recent milestones across our divisions, including: • Insights into the PEARS procedure shared by leading experts. • A spotlight on our Help & Resource Center, which fields over 5,000 inquiries annually. Don’t miss the answers to some of the most frequently asked questions! • Advice from teens across our community on thriving with a genetic aortic and vascular condition. • A recap of our fundraising gala events, which fuel our mission through the extraordinary generosity of donors and sponsors. The year ahead brims with possibility—whether it’s scientific breakthroughs, moments of laughter and camaraderie at our walks, engaging symposiums with experts, or the unforgettable connections made at our fundraising galas. Wishing you a joyful and healthy New Year. I can’t wait to see you in Atlanta! Warm regards,

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Winter 2025 VOLUME 44 | 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: Community members, healthcare providers, and Foundation sta ff gathered for the Houston HeartWorks gala on November 22 to honor those making adi ff erence and raise critical funds to support the Foundation's mission. Learn how HeartWorks started nearly 25 years ago with a mom on a quest for answers (page 12).