Connective Issues Fall 2022

The Marfan Foundation is a nonprofit organization that saves and improves lives while creating community for all individuals with genetic aortic and vascular conditions, including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. 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.

After three years of virtual learning and connection, it was amazing to see and feel the energy and enthusiasm at the E 3 Conference in Newport Beach. The magic and energy of our community is always evident when we come together. The halls and workshops were full of people learning and making or strengthening connections and friendships within the Marfan, LDS, VEDS, and related conditions community.

Hoag Hospital was an extraordinary partner and instrumental in the success of E 3 . Their amazing team and Dr. David Liang, along with our Professional Advisory Board and other dedicated medical professionals from across the country, donated their time and expertise to provide essential health screenings, give presentations, and lead workshops throughout the weekend. Because of very special donors, our teens and children also enjoyed a special trip to Disneyland. This unique experience was inclusive, accessible, safe, and, most of all, fun. Shortly after conference, the energy of togetherness was also evident at our kids’ camps in Georgia and Ohio, which we were finally able to safely host. And, we are excited to see the magic of our community yet again at our upcoming Walks for Victory and special fundraising events. Early this fall, we will launch a new series of educational events on Marfan, Loeys-Dietz, and VEDS. We are excited to host two in-person symposia in October - in Seattle and Atlanta - for affected individuals and their families. We are also offering a free, online Research Webinar Series featuring medical professionals who will cover topics like aortic disease, eyes, feet and ankle, lungs, and much more in the coming months. These are exciting times for our community. We are hopeful new trials and research will bring advances in life-saving care and treatment, and we look forward to providing you with the latest updates. Together, with our community, medical professionals, and researchers, the future is more promising than ever.

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Fall 2022 VOLUME 41 | 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.

As this edition of Connective Issues went to press, we lost a dear friend of our community, Jay Elliott. Jay has served on the Foundation’s Volunteer Leadership Committee and was a community chair of

p Jay, right, with Dawn Pulliam and Dr. Alan Braverman at the St. Louis Walk for Victory.

the St. Louis Walk for Victory since its inception. A leader of our St. Louis Chapter, Jay was also a passionate community advocate, sharing his experience with aortic dissection and living with Marfan and connecting with others on his own and through our Help & Resource Center to provide support. We extend our condolences to Jay’s wife, Mary, son, Bobby, and the rest of his family. He will be greatly missed.

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

ON THE COVER: Connor Wilson, along with more than 135 other teens and kids, had the special opportunity to visit Disneyland and meet Mickey at the E 3 Conference in July. Photo courtesy of Sapan Patel.