Connect Issues Winter 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 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

In 1981, Sandra Day O’Connor was appointed the first female on the US Supreme Court, a postage stamp was 18 cents, the top song was Physical by Oliva Newton John, Prince Charles married Lady Diana and, most importantly, The Marfan Foundation was founded. Little did we know that some 40 years later, our first leader, Priscilla Ciccariello, would be 95 and going strong, Dr. Reed Pyeritz, a founder, would be still involved in life-saving research and the author

of our Research & Progress appeal, and we would have enjoyed countless advances in life-saving care and treatment for individuals with Marfan syndrome and related conditions. It is also only fitting that, in our 40 th year, we established The VEDS Movement for individuals with Vascular Ehlers-Danlos syndrome, welcomed the Loeys Dietz syndrome Division and GenTAC Alliance, and greatly strengthened our national and international footprint. On the horizon is a sleek, contemporary, new website, which will be translatable into eleven languages, our first virtual Annual Conference and updated Research program early this summer, and our 11th International Research Symposium in the spring of 2022. This issue also features articles on the loss of two of our most loyal friends and supporters, Dr. Vincent Gott, a true pioneer in aortic surgery, and the incomparable Annie Reinking, our vibrant spokesperson and dear friend. While Annie’s passing left a huge void in all Marfan hearts, the outpouring of messages regarding her extraordinary impact on countless lives was truly remarkable. She was truly our star and we were blessed to be in her company on so many important and meaningful occasions. We will be honoring Annie later this year. Looking forward to the next 40!

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Winter 2021 VOLUME 40 | 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

ON THE COVER: Kate Jurgens, captured here in one of The Marfan Foundation's masks, is one of the founding board members of the Loeys-Dietz Syndrome Foundation and served on the board from its inception to 2014. "Photography gives me an outlet of storytelling in a different way," she says. Read more about Kate and Mo on page 11 in this edition of Connective Issues. Masks available at bonfire.com/ store/marfanfoundation .

THE MARFAN FOUNDATION 22 MANHASSET AVENUE PORT WASHINGTON, NY 11050 516-883-8712 | 800-8-MARFAN MARFAN.ORG