Connect Issues Spring 2021

YEARS

The Marfan Foundation’s mission is to save lives and improve the quality of life of individuals with Marfan syndrome, Vascular Ehlers-Danlos, Loeys-Dietz, and other genetic aortic and vascular conditions. 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 1981

“Hope makes us all stronger.” The Marfan Foundation marks an important milestone – 40 years of service to the Marfan community – this month. Born in Dr. Victor McKusick’s living room in Baltimore, full of belief in the strength of working together and hope for the future of those affected by Marfan syndrome and related conditions. Hope for life-saving treatments. Hope in emboldened research. Hope for future lives well lived.

Today, we find ourselves living the embodiment of all our founders’ hopes, with many medical and quality of life advances supporting our communities so they can now live longer, healthier lives. We’ve worked for and witnessed many successes along the way in all areas of our three-pronged mission of education, patient support, and research, executing strategically and passionately on the vision that our incredible Chair Emeritus Priscilla Ciccariello had when she got involved early on. And just like our founders in 1981, we too are looking to the future with hope. We continue to strive for a brighter future for those affected by Marfan syndrome. Leveraging our past successes, we are putting our strengths to work for the VEDS and Loeys-Dietz syndrome communities, and serve all those with genetic aortic and vascular conditions all over the world. The coming months are exciting for us as our community continues to get together at our Walks for Victory (many online this Spring) and celebrate Loeys-Dietz Awareness Month in June. July brings our first ever Virtual Annual Conference, with a creative and unique program driven by a team of our passionate and talented volunteers. This virtual conference will offer all the outstanding medical information you need, with an extra dose of opportunities to connect with fellow members of the community. After the year we’ve all been through, we are all ready to reboot our connections! You can meet some of our outstanding community members in this edition of Connective Issues and see the impact we’re making together, in the US and internationally. Through these efforts, and others, we light the torch of hope for the next generation. Much of what was unimaginable in 1981 seems commonplace to the young people in our communities today. We are building another future now with the help of our talented medical community, passionate volunteers and supporters, and every hope of every member of this community. It is wonderful to have your support, and your hope, on this journey.

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Spring 2021 VOLUME 40 | 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: Roc Fittin, age 5, celebrating a positive cardiology scan in March. Roc was diagnosed with Marfan syndrome at age 2, after a visit to his eye doctor, who noticed his lenses were dislocated. He lives with his parents and two siblings in Rogers, Arkansas. Photo credit: Alex Fittin @theadoptivemom