Connective Issues Spring 2019

AN EXCITING TIME IN THE LIFE OF THE FOUNDATION

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

I hope you enjoy the new look and feel of Connective Issues which celebrates Growing Stronger Together! This is a very exciting time in the life of the Foun- dation—great energy, wonderful opportunities, sentimental moments, and an extraordinary volunteer and staff commitment. I am especially proud of our support of the vascular Ehlers-Danlos community over the past year and the special vEDS track at this year’s Annual Conference. Serving the related conditions community is a major priority for the Foundation and we are committed to making a life-enhancing difference for our extended family of conditions. It’s also noteworthy that The Marfan Foundation was again selected as one of the 50 “Best Nonprofits To Work For” by NonProfit Times. And, we recently received the 2019 Guidestar Platinum Seal of Transparency. We are quite proud of these designations, but even prouder of the wonderful nationwide volunteer and staff team that works tirelessly every day to support the Marfan and related conditions community. See you in Houston! Can’t wait…

CONNECTIVE ISSUES SPRING 2019 VOLUME 38 | 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 or by mail to: Connective Issues

Sincerely,

Michael Weamer President & CEO

The Marfan Foundation 22 Manhasset Avenue Port Washington, NY 11050

This issue of Connective Issues is made possible through a grant from the Chu and Chan Foundation.

ON THE COVER: Hunter Beckholt , the Youth Ambassador for the 2019 Houston Walk for Victory. He’s come a long way since we first met him at our 2010 Annual Conference (pictured right with his parents, Steve and Nora ). Cover photo courtesy of Marfan staff.

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

Photo courtesy of Tim Joyce