Connect Issues Winter 2022

YEARS

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 1981

While it’s true that we’ve been physically distant for the past year and a half, we have certainly not been distant socially. We expanded our virtual programming in new and creative ways, and even more people participated with the Foundation and its divisions, The VEDS Movement, Loeys- Dietz Syndrome Foundation, and GenTAC Alliance. There is strength in numbers and, when we combine our e ff orts, it is clear to see that we are strongest together.

There is no stopping the Marfan, Loeys-Dietz, VEDS, and related conditions community. As you will read in this issue of Connective Issues , our community members are not just surviving. They are thriving. Our Walks for Victory – whether online, as they were in the past year, or in-person, as we’ve started to experience again in Fall 2021 in Cleveland and St. Louis – are a perfect example of our strength. These events bring together the community of people with Marfan, LDS, VEDS, and Stickler syndrome, as well as our medical champions, in a day of celebration. The doctors who serve as medical chairs and their institutions, which provide valuable sponsorship support, are truly part of our family, and we could not be more grateful for their partnership. Their involvement makes us strongest together. Our other programming also brings people together in ways they never imagined. They come for information and access to the best doctors. They get that and so much more. We are inspired by the life-long friendships that stem from our annual conference and the relationships that are fueled by our virtual support groups. We learn together, we laugh together, and we cry together. In the end, everyone feels better informed, more empowered, and well supported. No doubt, we are strongest together. In the year in which we were forced to connect virtually rather than in person, there was an interesting twist in that we successfully broke down geographic barriers for education and connection. Experts from other countries were able to present as part of our programming and people with Marfan, LDS, and VEDS from all over the world were able to participate – without buying a plane ticket or making hotel reservations. In the coming year, we will feature more international programming than ever before – both online and in person. We are clearly now strongest together globally. Now, as we start a new year, we have much to look forward to. While we don’t know exactly what the new year will bring, we do know that we will do it together – because we are strongest together. Wishing you happiness and good health in 2022.

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Winter 2022 VOLUME 41 | 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: Laurel Giacone and Anthony Striker first met as young teens at one of our annual conferences. At the time, both Laurel and Anthony's sister, Amy, had a Marfan diagnosis. This spring, Laurel and Anthony will be married. Read about their unique conference connection on page 11. Photo credit: Robin Pagano Photography