Connect Issues Fall 2021

YEARS

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 and vascular 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.

SINCE 1981

If the Covid-19 pandemic has highlighted one thing it’s the importance of connection. Though we’ve had to learn new skills and try new ways of connecting, community is what’s pulled so many of us through this challenging time. Our community of people with Marfan, Loeys-Dietz, and VEDS has been here for one another and, hopefully, we will be able to connect again safely in the coming months. In July, The Marfan Foundation hosted our first

Virtual Annual Conference. We were joined by 1,800 participants from 60 countries around the world for a weekend of medical presentations, discussions, and opportunities to connect. The goal was simple: reboot connections with professionals, researchers, and community members after a year of uncertainty and, for many, isolation. Many thanks and to our friends and sponsors who helped make this event a success: Children’s Hospital of Philadelphia, Aytu Bio-Pharma, and Terumo Aortic. One of the most inspiring parts of the Virtual Conference was seeing the growth of connections within the Marfan, LDS, VEDS, and related conditions communities. It was great to see the sharing and connections both within and between the different condition groups and our incredible medical professionals who support them. Connecting people and resources is at the heart of our mission and the core of what we do every day. As we begin the first months of our 2021-2022 fiscal year, we have high expectations for how this vital theme of building connections will serve our entire community. The Virtual Annual Conference served as a launch point for the year’s Personal Perspective and Virtual Medical Education webinar series. Sessions like Growing Older with a Connective Tissue Condition and Help for the Newly Diagnosed (separate sessions for Marfan, LDS, and VEDS), and nearly all other sessions from the virtual conference, are available online for access anytime and anywhere. This Fall, we'll have many more great discussions from medical professionals and community members. We also saw many connections made through support groups during the Virtual Annual Conference. These too continue throughout the year, with multiple ways to connect across the Marfan, Loeys-Dietz, and VEDS communities. Many things are still uncertain this year, but we remain steadfast in our commitment to our community, our medical professionals, and researchers. Together we are staying strong and continuing to support the needs of our incredible community.

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Fall 2021 VOLUME 40 | NUMBER 3 Connective Issues is the newsletter of The Marfan Foundation. It is published three times per year.

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.

Michael L. Weamer President & CEO

ON THE COVER: Riley O’Brien is pictured on the cover with his pediatric pulmonologist, Dr. Maureen Josephson, Medical Director of the Lung and Heart/Lung Transplant Programs at Children's Hospital of Philadelphia (CHOP). Riley, age 13, underwent a heart and lung transplant when he was five years old. Read about Riley beating the odds every day living with heterotaxy (a rare condition affecting the location of organs in the body) and a recent Loeys-Dietz diagnosis on page 12.

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