Connective Issues Spring 2022

The Marfan Foundation is a nonpro fi t 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.

Spring is here, and there is so much to celebrate. Research, which provides so much hope for today and better lives for the future, has come so far. We are so very grateful to the clinicians and scientists at the forefront of life-changing breakthroughs making life better for generations to come. From the leading researchers in the fi eld, many of whom are on our Professional Advisory and Scienti fi c Advisory Boards, to those who are our latest research award

recipients bene fi ting from our enhanced Research Grant Program, you are individually and collectively making a lifesaving di ff erence. We also continue to see results from the ancillary studies we helped to fund as part of the NHLBI clinical trial a few years ago. Another celebration is for our community coming back together again – this spring at HeartWorks St. Louis and at so many Walks for Victory around the country and then, this summer, at our E 3 Conference: Educating, Empowering, and Enriching Our Community. We could not be more excited about E 3 , which is being held in association with Hoag Memorial Hospital Presbyterian on July 7-10 in Newport Beach, CA. We will have general sessions, medical workshops, and more breakout sessions than ever before on mental health topics, plus individualized tracks for Marfan, Loeys-Dietz, and VEDS, mixers to connect with old and new friends, a special trip to Disneyland for children and teens, and so much more. I hope you will join me there! As we emerge from the pandemic, we have felt the power of our community. Our in-person events this spring have been bigger than ever before. And your impact when you come together to support each other and help advance the mission of the Foundation is all inspiring. With this renewed connection and enthusiasm, we hope you are experiencing the optimism of the future. We are thankful for the opportunities for our community that are brought about by advances in research and the doors opening for personal and group in-person experiences. We hope reading this Connective Issues will have you celebrating as well. See you in Newport Beach!

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Spring 2022 VOLUME 41 | 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: Recipient of the 2021 Career Development Award, Je ff erson Doyle, MBBChir, PhD, Johns Hopkins University