Connect Issues Winter 2022

As a clinician closely involved in the care of Marfan pa- tients, I have witnessed the Foundation’s dedication and commitment to creating a community and saving the lives of these patients. The Walk for Victory brings patients and professionals together as one big family with one goal, to save and improve the lives of patients with Marfan and related conditions. By participating in the Walk for Victory, we want to show that we care, and it matters to us to be part of this community. – IRMAN FORGHANI, MD, UNIVERSITY OF MIAMI (SOUTH FLORIDA) Dr. Forghani, left, with Dr. Juanita Hunter, UM pediatric cardiologist, at a South Florida Walk for Victory

It is inspiring to see the patients, families, physicians, nurses, surgeons, and geneticists unite for such a tremendous Foundation and great cause. The Walk allows my team at Lurie Children's Hospital to form relationships with our patients and their families outside the hospital's walls. It's an excellent opportunity to share the Foundation's mission, disseminate information, address questions, and hear about what matters most to our patients. It is also a way to show the community the excellence of care we provide at Lurie Children's Hospital. – KELLY COX, MD, ANN & ROBERT H. LURIE CHILDREN'S HOSPITAL (CHICAGO)

Dr. Xydas (far right/blue shirt) walks with the community at the South Florida Walk for Victory What I like best about the Marfan Walk for Victory is the ability to meet with patients, families, and fellow medi- cal professionals with the common goal of elevating the quality and coordination of the care of the Marfan commu- nity. It is very uplifting to hear from patients and families about their direct experiences and needs and how we can improve to meet them. – STEVE XYDAS, MD, MOUNT SINAI MEDICAL CENTER (SOUTH FLORIDA) The greatest value is an opportunity for patients and their families who are walking down a road in life that a lot of people they know aren't...a road they aren't necessarily prepared for, and that can sometimes be scary and lonely... to connect with, to walk with—both literally and figuratively— down the road together. We want to foster that community that allows people to join in meaningful ways. – TOM COLLINS, MD, STANFORD CHILDREN’S HOSPITAL (NORTHERN CALIFORNIA)

Dr. Ca ff arelli, left, with Dr. David Liang, right, and members of the community at the Southern California Walk for Victory The Marfan Foundation Walk is an incredible day! From the clinician side, my staff and I love seeing the patients and their families outside of the hospital having fun. Those interactions keep my clinical team going through the long hours at the hospital. – ANTHONY CAFFARELLI, MD, HOAG HOSPITAL (SOUTHERN CALIFORNIA)

The reason I am such an ardent Marfan Foundation supporter and why I encourage my colleagues and hospital to be a part of the Walk for Victory is that it provides the rare opportunity for doctors, patients, and families to gather outside of the hospital setting, make personal connections, and enjoy each other's company. It serves as a reminder of why we are a part of the Foundation in the first place - to facilitate the health and well-being of our patients so that they can enjoy a life lived to its fullest potential with family and friends. – CLAYTON KAISER, MD, ASCENSION SAINT THOMAS HEART (NASHVILLE) Dr. Kaiser enjoying the Nashville Walk for Victory with his family

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Winter 2022