Connect Issues Winter 2021

PAB THANK YOU As we begin the 40 th year of The Marfan

INTRODUCING OUR NEWEST PAB MEMBERS

Foundation, we want to share a special thank you to our Professional Advisory Board (PAB), which is currently chaired by Dr. Heidi Connolly, Mayo Clinic. These healthcare providers are the leading medical experts on Marfan, LDS, VEDS, and other genetic aortic and vascular conditions. They are our trusted advisors who volunteer their time and expertise out of deep commitment to our community. Many of the PAB members have been have been involved with the Foundation throughout their careers, some even from our inception in 1981. Each member is an expert at the top of their field, providing us with the most up-to-date information on research opportunities, treatments, and management. Members of the PAB volunteer their time and expertise with us throughout the year. They assist Jan Lynch, the nurse who heads our Help & Resource Center, address inquiries, lead medical education webinars, and provide medical oversight for our materials. In 2020, they rose to the occasion as we worked to give our community COVID information specific to their needs and answer the many questions about how COVID would affect someone with a genetic aortic or vascular condition. The PAB was also instrumental in the International E 3 Summit, giving presentations and answering questions from the 3,000 participants from all over the world. In addition, members of the PAB guide us as to when and where our advocacy efforts would be most worthwhile. They serve as strong advocates for the Foundation with universities, hospitals, professional organizations, and donors. At times, they need to deliver advice that is different from our desires or wishes. They help us answer difficult questions like why CRISPR technology is not a useful tool for us at this time or why these conditions are not ready to be listed on the newborn screening panels. The PAB provides us with hope and guidance for truly viable treatments and technologies, as they emerge. We are thankful that, during this pandemic, we can rely on them to provide us with the best guidance that is specific to our community’s issues and conditions. This talented group of volunteers is vital to our mission and we are deeply grateful to each and every one! For a complete list, please go to our website.

Adam Bitterman, DO , is an orthopedic surgeon and foot and ankle specialist at the Northwell Orthopaedic Institute and assistant professor of orthopaedic surgery at the Zucker School of Medi- cine at Hofstra / Northwell. Dr. Bitter-

man, who is affected by Marfan syndrome, has been a frequent workshop leader at the Foundation’s Annual Conference and has been a featured speaker in our Virtual Medical Symposium Webinars.

Mark Lindsay, MD, PhD , is a pediatric cardiologist/cardiologist specializing in genetic aortic disease at

Massachusetts General Hospital and Massachusetts General Hospital for Children and assistant professor of medicine at Harvard Medical School. Dr. Lindsay’s laboratory is primarily interest in the clinical expression and molecular etiology of aortic aneurysms, including VEDS. Gretchen MacCarrick, MS, CGC , Disorder Clinic Team at the McKusick- Nathans Institute of Genetic Medicine at Johns Hopkins. Gretchen, who has been involved with The Marfan Foundation for many years, is a co-founder and past president of the Loeys-Dietz Syndrome Foundation (now a division of The Marfan Foundation). Chris Malaisrie, MD , is a professor of is a genetic counselor on the Cardiovascular Connect Tissue

surgery in the division of cardiac surgery at Northwestern University and attending cardiac surgeon at Northwestern Medicine, as well as co-director of the Marfan Clinic,

Bicuspid Aortic Valve Clinic, and Thoracic Aortic Surgery Program within the Bluhm Cardiovascular Institute. He hosted the Foundation’s Annual Conference in Chicago in 2012 and 2015.

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Winter 2021