Connective Issues Winter 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.

Since our inception, the Foundation has focused on advancing science to extend the lives and enhance the lives of the people we serve. We are incredibly proud that, in our 40 years, we have played a critical role in bringing together the scientific community and supporting research in ways that make a di ff erence for those living with Marfan, Loeys-Dietz, and VEDS.

Through our expanded Research Grant Program, we recently awarded $620,000 in new grants to physicians and scientists, including the largest grant awarded in our history – the Everest Award – bringing our total current funding to $1,285,500. In addition, through our Loeys Dietz division, we funded a potentially ground-breaking study that is an exciting opportunity for the future treatment of Loeys-Dietz syndrome. In August, we convened our largest international science meeting ever, Science in Paris, which featured dedicated day-long programs on VEDS and genetic aortic conditions, as well as two days on Marfan and Loeys-Dietz. We brought together more than 270 of the world’s leading researchers and clinicians, along with dozens of young investigators embarking on their careers with incredible passion for unraveling the mysteries of connective tissue conditions, as well as genetic aortic and vascular conditions. And while in Paris, we also learned of the publication of new data emanating from a meta-analysis surrounding the losartan-beta blocker clinical trial on Marfan that we were involved in since its inception. That investment continues to reap benefits. You can read about all of this exciting research news in this edition of Connective Issues . We are hopeful these studies and collaborations will lead to advances in life-saving care, treatment, and ultimately, a cure for those living with Marfan syndrome, Loeys-Dietz, VEDS, and related genetic aortic and vascular conditions. As we enter 2023 and reflect on what we’ve helped to bring about in research over the past year, I can truly say that the future has never looked so promising for our community. Many thanks to Dr. Josephine Grima, our chief science o ffi cer, and an extraordinary research community for leading the way in our success. Finally, we want to thank Cory Eaves, as he will soon conclude a remarkably successful tenure as board chair during one of the most challenging times in our history. And, we are thrilled to welcome Bert Medina as our chair-elect and look forward to his leadership. With your continued support, we can’t wait to see the progress we can all make together in the New Year! Thank you for your ongoing support of research and progress. Best wishes for a happy and healthy 2023.

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Winter 2023 VOLUME 42 | NUMBER 1 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: New advances in research are providing hope for our community, including the Hervatin family from Arizona. Lincoln, held by his mother, has Loeys-Dietz. Read his story on page 13.