Connective Issues - Fall 2019

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.

This past summer, we celebrated our 35 th Annual Conference anniversary, took stock of how far we have come in our fight for victory, and set ourselves up to take the next steps in building a better world for people living with Marfan, Loeys Dietz, Vascular Ehlers-Danlos, and other genetic aortic conditions. While Annual Conference is only

one weekend each year, it brings focus to and is a celebration of what our community does all year around. Many thanks to the sponsors, partners, and our host, Texas Children’s Hospital, for a spectacular weekend. Special thanks, also, to Joseph Coselli, MD, for his boundless support of this Annual Conference. One major milestone was the announcement of our Ensure Access Campaign , which was launched to support Conference scholarships for years to come. This campaign is now closing in on its $1 million goal thanks to the support of so many individuals in our community who want to share the life- changing experience of Conference with others. Another exciting and positive step has been the partnerships and leadership that have allowed us to bring more attention and focus to Vascular Ehlers-Danlos, Loeys Dietz, and additional related genetic aortic conditions. New Conference offerings specifically for these conditions added a new layer of depth and understanding for all members of our community. I’m already looking forward to our 2020 Annual Conference in Boston. We hope you’ll join us and Boston Children’s Hospital, July 9-12, for what is sure to be another remarkable experience.

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES FALL 2019 VOLUME 38 | NUMBER 3 Connective Issues is the newsletter of The Marfan Foundation. It is published three times per year.

Sincerely,

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. All photos in this edition of Connective Issues are courtesy of Tim Joyce, unless otherwise noted.

Michael Weamer President & CEO

ON THE COVER: Conference Children’s Program volunteer, Marty Farley , pictured here with Fiona Grace McCray , age 7 at the 2019 Annual Conference. Fiona was diagnosed with Marfan syndrome at age 3. About her Conference experience, Fiona said, “My favorite part of the conferences are the parties, there is something to do all the time and the classes are fun too.”

2020 ANNUAL CONFERENCE Mark your calendar now to join us July 9-12, 2020 in Boston for the 2020 Annual Conference, in partnership with Boston Children’s Hospital.

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