Connect Issues Fall 2020

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Powered by The Marfan Foundation and VASCERN

q Summit sessions featured medical experts as well as members of our community giving a personal perspective. For example, this session on aortic surgery featured Dr. Chris Malaisrie, Northwestern Medicine (top), Dr. Maral Ouzounian, MD, Toronto General Hospital, and Bill Barnhart, of Virginia, who has Marfan. More on the next page. I still am in awe that I was able to hear from such world-renowned experts. Thank you so much for this opportunity. I now don't feel like such a tiny grain of sand swallowed up by the beach. My condition matters and there is hope. Feedback from Our Community Whether you or a loved one is affected by a connective condition or you are awaiting a diagnosis or even if you are a medical professional, there is so, so much to be learned about surgical and medical interventions, genetic therapies, quality of life concerns, etc. Involvement in the Summit left me with a renewed sense of hope for those whose physical, mental, and emotional well-being is affected by a connective tissue condition. Absolutely amazing and resourceful event. I can't thank you enough for this opportunity. My journey so far has been all over the place. I now have better tools to help my medical professionals assist me because they are obviously in the dark about Marfan. I have more knowledge now because of your devotion to this advocating. Thank you from the bottom of my special heart! Hugs and love to all of you! I thought I had a moderate amount of understanding. Now I realize how little I knew. Plus, there have been a lot of new treatments since my daughter was diagnosed 30 years ago. Knowledge is power and I want to keep up for her sake and my grandson. INTERNATIONAL E 3 SUMMIT

Empower

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p Dawn Ockstadt’s cat watched with her from Orlando, FL.

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Fall 2020