Connective Issues - Winter 2020

AN EXCITING TIME IN THE LIFE OF THE FOUNDATION

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.

When we look at the numerous ways in which Marfan research has positively impacted the lives of our community, it’s hard to believe that 40 years ago the outlook was so different. Thanks to the dedication of many researchers, their institutions, and individuals like you, this generation will never know what it was like without many of the life-saving techniques, medications, and therapies now available to our community.

What started as Marfan-focused research in 1989 opened up discovery not just for the Marfan community, but also for those related conditions that have been identified – some as a result of Marfan research. In this edition of Connective Issues , you can read about Peter, who points to Marfan research for improving his life with Loeys-Dietz. We have also recently launched new programs and services for the Vascular Ehlers-Danlos community, through our new VEDS division, for a community previously underserved. Thanks to medical advances – including new drug therapies, innovative surgical techniques, and better diagnostic testing – people are living long and successful lives. That opens up the need for us to focus on quality of life issues – so people who are living longer, can live a full and happy life. For the kids in our community – who have the advantage of an early diagnosis and early treatment – this means normalizing their childhood by providing a camp experience that is safe. Camp Victory is an area of progress where we see so much of this spirit come to life. You can read more about that from Liam’s perspective in this edition, too. It takes a community to push forward with the amount of progress we’ve seen over the last 40 years. It will take a community to see the next advances through. In another generation, they’ll look back and wonder how they ever lived without something that we will initiate with research today. We’re so grateful to have you with us as we march toward victory and we can’t wait to see what progress happens as a result of your continued support.

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES WINTER 2020 VOLUME 39 | 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.

Sincerely,

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

Michael Weamer President & CEO

ON THE COVER: Members of Team Arnold, Katie Arnold (17) on left, dog Charlie, and Natalie Arnold on right (10) participating in the Indiana Walk for Victory.