Connective Issues Spring 2018

Having recently completed my third year as President & CEO of The Marfan Foundation, it is a time of reflection as well as looking to the future. I have learned that… • We have the most resilient, engaged, and knowledgeable community of its type. • Our Board of Directors is a passionate and seriously engaged group of leaders focused on measuring success

The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders. 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. Learn more and get involved at Marfan.org .

through organizational impact. • We have a world class Professional Advisory Board who individually and collectively care for our community members with passion, warmth, and great expertise. • We have a staff of wonderfully talented professionals who touch and help improve lives every day. • And, we have chapters, community groups, and engaged volunteers nationwide who provide front line support for our community 24/7. I have also learned that... • Way too many people continue to struggle with Marfan syndrome and related conditions and we need to do more to improve quality of life for all. • We must be vigilant in our use of resources. • We need to do a better job of supporting related conditions and providing an umbrella for an ever expanding community. • We need to expand our nationwide volunteer base and generate significant, new unrestricted income to adequately fund our fight for victory. • And, we need to establish an international footprint. Although much remains to be accomplished, I am very proud of… • The growth of our Annual Conference and the increasing number of patient symposiums throughout America. • Our ever expanding research program, which will continue to interest young researchers in joining our movement to help improve and save lives. • The upcoming launch of our International Marfan and Related Conditions Registry. • The development of our Quality of Life program. • Our Walk for Victory campaign in more than 15 cities nationwide. • Our commitment to excellence in managing the Foundation as recognized by Charity Navigator, Better Business Bureau, National Health Council, and Best Places to Work in America.

Contents QUALITY OF LIFE 4–6 WALK FOR VICTORY 9 RELATED DISORDERS 10 FOUNDATION NEWS 11 SPECIAL EVENTS 12–14 TRIBUTES 15

CONNECTIVE ISSUES SPRING 2018 VOLUME 37 | NUMBER 2

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

I look forward to seeing many of you at our Annual Conference.

With appreciation,

COVER: DR. AND MRS. ALAN BRAVERMAN, HOSTS OF HEARTWORKS ST. LOUIS. READ ABOUT THIS EVENT ON PAGES 12-13.

This issue of Connective Issues is supported by an educational grant from the Chu and Chan Foundation.

Michael L. Weamer President & CEO

2 Marfan.org