Connective Issues Spring 2023

The Foundation is excited to host its 39 th Conference in Chicago, July 13-16. This educational event, which will be held in collaboration with Ann & Robert H. Lurie Children’s Hospital and Northwestern Medicine, brings together community members from across the country, including a ff ected individuals, family members, and healthcare providers, to share experiences, learn from each other, and stay up-to-date on the latest developments and research in Marfan syndrome, Loeys Dietz syndrome, VEDS, and related conditions. “We invite you all to join us at this year’s Conference where we will gather to hear the latest in research, exchange ideas and knowledge, and build valuable connections,” said Michael Weamer, President & CEO, The Marfan Foundation. “We thank our esteemed co hosts, Ann & Robert H. Lurie Children’s Hospital and Northwestern Medicine, for their support and making this event possible.” Conference o ff ers a variety of in-person educational sessions, interactive workshops, and networking opportunities. Attendees can attend presentations from medical experts on topics such as medical management, cardiac surgery, orthopedic issues, pain management, and aging with a connective tissue condition. The workshops cover a range of subjects, including yoga and mindfulness, nutrition and exercise, and coping with chronic illness. Conference events will be held at the Palmer House Hotel. Health Fair Once again, we are o ff ering a free Health Fair for registrants on July 13-14. The Health Fair, which will take place at Ann & Robert H. Lurie Children’s Hospital, is an opportunity for attendees to visit with multiple medical professionals to get questions answered and discuss medical concerns. Visit Marfan.org/conference for details.

Learn more and register at Marfan.org/conference.

Educational Opportunities The General Session on Saturday, July 15, will feature the latest information on these conditions, including updates from the new ACC/AHA guidelines for the management of Marfan syndrome, VEDS, and LDS for adults and children; aortic and vascular surgery; cardiac imaging, GI issues; and mental health. New this year is the option to view the morning General Session via livestream on Saturday, July 15, from 8:30 am - 12:00 pm Central. This will make several important presentations accessible to individuals who are unable to attend due to distance or health-related concerns. Continued on next page... “Last year was our first Conference and we are so grateful to have attended. It was a life-changing event for my whole family. My daughter has felt so lonely since finding out about her diagnosis. Her demeanor changed completely during Conference. I have never seen her so happy, and she felt so comfortable socializing and getting to know her new friends!”

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Spring 2023