Connect Issues Fall 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.

I hope you will take a moment and read Huck’s Legacy in this issue, as he represented the very best of individuals with Marfan syndrome and related conditions, because he was a fighter from the moment he was born until his untimely passing. Like Huck, Elijah Williams, on our cover, is also a fighter. He had his first Marfan-related heart surgery at age 17 and, like so many others, has had our community with him all along the way!

Many would suggest today is the most exciting time in the history of the Foundation and, while COVID-19 required us to immediately pivot to protect and inform our community, we have never been stronger. In the past year, we established the VEDS Movement and welcomed the Loeys-Dietz Syndrome Foundation as a new division. On October 1, the GenTAC Alliance joined our family and we powered the GenTAC Aortic Summit earlier this month. Finally, this summer, we held the truly amazing International E 3 Summit in partnership with our friends at VASCERN. In this issue we also celebrate the retirement of Dr. Reed Pyeritz, a founder of The Marfan Foundation. Reed and his wife, Jane, have been remarkable supporters of the Foundation and our patient community, and we wish them good health and good fortune as they enter this exciting new chapter of their life. Thank you for being part of our Fight for Victory ! With your continued support, our journey is just beginning and many victories are on the horizon. To the better days ahead,

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Fall 2020 VOLUME 39 | NUMBER 3 Connective Issues is the newsletter of The Marfan Foundation. It is published three times per year.

Michael L. Weamer President & CEO

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.

ON THE COVER: Elijah Williams had his first Marfan- related heart surgery at age 17. Eight years later, he’s had four total heart surgeries. See Elijah’s full story on his Instagram (@publicenemy1_) or on our blog. Some of our community-generated feedback to help him balance physical and mental recovery from Marfan-related surgeries can be found on page 13.

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