Connective Issues Spring 2024

Greetings, What an exciting season this has been for the Foundation! We have so much to celebrate. We’ve had tremendous Walk for Victory events across the country that brought together our community members, renewing long-standing friendships, and creating new connections. Our Houston event saw the largest VEDS team in our history. We gathered for record-breaking fundraising galas that enable us to advance our mission. Thanks to the

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.

generosity of our supporters, we’re funding a new Everest Award with the potential to enhance prevention and treatment of aortic dissection. We’ve held educational symposia recently in Austin, Texas, and Portland, Oregon, and webinars – such as our recent Loeys-Dietz-focused webinar on women’s health – that helped empower our community members to live their best lives. This edition of Connective Issues reflects the Foundation’s dynamic energy. Don’t miss the chance to read all of our stories, including pieces about: • Virtual Hill Advocacy Days where community members used their powerful voices for good • Our Everest Award granted to Dr. Julie De Backer and team • Community member Buddy Benge’s talk that educated 10K people about Marfan syndrome • A recap of our record-breaking Marfan Awareness Month 2024 • Jameson’s family toy drive • Our global outreach and Spanish-Language events • Bella Sera – a talented percussionist who rocks life with Marfan syndrome As terrific as the past few months have been, we might say “the best is yet to come” because we have so many wonderful happenings set for late spring, summer, and autumn. We have eight more walks to look forward to in June. Camp Victory registration is open and provides families and young people the chance to enjoy a full summer camp experience that is safe and medically-supervised. Symposia are coming to London and Oslo this summer, convening experts and laypeople. And, last but not least, registration is opening for our Global Virtual Conference 2024, which will be held June 17-22. No sessions will be held on June 19, in recognition of Juneteenth. Our Global Virtual Conference connects people living with genetic aortic and vascular conditions, their loved ones, healthcare providers and researchers from around the world for a unique event that holistically explores the many facets of life with Marfan, Loeys Dietz, VEDS, and related conditions. Topics include advancements in medical management, mental health and well-being, the latest research, building community, and much more. A series of live engaging sessions will culminate with a virtual Victory Party celebration. Looking forward to being with you for the Global Virtual Conference and at in-person events around the country and the world! Thank you for bringing the Foundation’s mission to life every day!

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Spring 2024 VOLUME 43 | NUMBER 2 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: Drummer Bella Sera fulfills her passion while living with Marfan syndrome. Read more on page 12. Photo courtesy of Reece Paz.