Connective Issues - Summer 2020

“The best way to predict the future is to create it!” - Peter Drucker 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.

As we embark on our 40 th year, it is truly like no other time in the history of The Marfan Foundation. Although there are many unknowns, just like there were 40 years ago, the Foundation is well positioned to reimagine its future and be stronger than ever before. In the last 12 months, we have created the Vascular EDS Division, powered Aortic Disease Awareness Day, expanded to serve Stickler syndrome and, on July 1, the Loeys Dietz

Syndrome Foundation joins our Foundation. Yes, we are better organized and energized than ever to serve individuals with Marfan syndrome and related conditions. While all this has been happening, we battled COVID-19 with every resource available from the Foundation. Our Professional Advisory Board and extended medical community shined in every way imaginable, our Help & Resource Center was there to meet everyone’s immediate needs, and we stayed focused on keeping our community informed and protected. I am extraordinarily proud of the combined efforts of our volunteers and staff and will be forever grateful to our medical community. They are at the very core of every success we enjoy! While we are all extremely disappointed about the inability to hold our Annual Conference this summer, in this issue you will read about the International E 3 Summit, the largest educational undertaking in the history of the Foundation. And, for sure, we will see you next year in Chicago for our Annual Conference. This is really a great time to be involved with the Foundation. And, we will only become stronger as we embark on the better days ahead. Stay well, stay safe, and rest assured we are with you every step of the way. It is our time!

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES SUMMER 2020 VOLUME 39 | 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.

Sincerely,

Michael Weamer President & CEO

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

ON THE COVER: Global Walk for Victory participants celebrating $21,000 raised in this inaugural walk on May 5, 2020.