Connect Issues Winter 2021

have friends provide meals for me. We live in a small neighborhood. The dog and I do a lot of walks around the neighborhood and this has turned out to be a great time for me to do walking meditations. Learn and Advocate : When I look back, my first thought is that there is no way to be prepared to see someone you love with so many tubes, drains, and a ventilator. I saw Julie’s heart beat underneath a thin layer of gauze. I read, I studied videos, I asked questions. I was her person and I wanted to understand and know everything I could know. I would show the nurses photos of Julie prior to the surgery and share videos of her doing her Djembe drumming. She looked nothing like that person and I wanted them to know who she was. I would remind everyone who cared for her that she is deaf in one ear, that she gets anxious at night, and that she is very sensitive to medication because of Marfan syndrome. I would remind them that she is very flexible and to be aware of hyperextensions of her joints.

I had tremendous trust in the teams and valued the open communication. I believe it is paramount to choose doctors and a hospital that you thoroughly trust as the facility and the doctors will become your partner in this process. Functional: As far as the functional components of care giving, I thrive with a schedule. I keep a notebook with medications (AM, PM, and other times) and a place to monitor blood pressure and heart rate. When I have questions, I send a message to our cardiologist at the Cleveland Clinic. I also reach out to an internist we work with locally. It has been helpful to find out what supplies we will need in advance and keep them well-stocked at home. Read side effects of medications. Ask questions and then ask more questions. Bottom Line : This is hard! Be ok with your feelings. Whether you are sad, relieved, frustrated, angry...be ok with that. They are your feelings. You will feel a hodge podge of feelings, often at the same time. Accept all of it. This is your journey, too.

MOURNING THE LOSS Ann Reinking Ann Reinking, our dear friend and remarkable

Dr. Vincent Gott Dr. Vincent Gott, one of the true pioneers in aortic surgery for people with Marfan syndrome, passed away on November 20, 2020, at the age of 93. Dr. Gott performed the first Bentall procedure at Johns Hopkins for an aneurysm of the ascending aorta in 1976. In all, he conducted 150 aortic and root

volunteer spokesperson, passed unexpectedly on December 12, 2020. Annie was known to the world as an award-winning dancer,

choreographer, and actor. To us, she was a treasured member of the Marfan family, and we all knew that her favorite role was that of mother to her son Christopher, who has Marfan syndrome. Her contributions to the Marfan and related conditions community were many and focused on giving hope, inspiration, and support to families around the globe. The Foundation honored Annie In 2014 with the Priscilla Ciccariello Award and, in 2018, with the Karen Murray Inspiration of Excellence Award. We will be forever grateful for the grace, spirit, and energy Annie brought to everything she touched and the magic she brought to The Marfan Foundation for decades. Our thoughts and prayers are with her husband Peter, son Chris, and their entire family.

replacements in patients with Marfan syndrome, and he co- directed the Broccoli Center for Aortic Diseases at Johns Hopkins. A study Gott led in 1986 found that early surgery to repair dangerous weaknesses in one of the heart’s major blood ves- sels could prevent premature death in patients with Marfan. His 1999 paper in Annals of Thoracic Surgery concluded that “Marfan patients with aortic aneurysms can undergo elective surgery with a low operative risk and excellent long-term sur- vival with low morbidity. We feel that elective resection of an aneurysm in a Marfan patient should occur when it approach- es a diameter of 5.5 cm. It is essential that a timely diagnosis be made in this group of young patients.” Dr. Gott’s contributions to the care of Marfan syndrome patients and his leadership in the early days of The Marfan Foundation were tremendous. He was a member of our Professional Advisory Board since its inception and we honored him with the Antoine Marfan Award in 1998. The Foundation offers its heartfelt sympathy to his family and friends.

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Winter 2021