Connective Issues - Winter 2020

Peter Donato is a fan of all things Boston. He’s also a regular volunteer with the Foundation and he lives with Loeys-Dietz syndrome. Peter will tell you that he’s a walking testament to Marfan research. This might sound odd considering Peter does not have Marfan, but he draws a straight line between the progress in Marfan research and the optimism he has for his life. “Without medical advancements and research, Loeys- Dietz wouldn’t have been discovered and the things I need to know about my condition wouldn’t have been figured out,” Peter says. Even a Marfan-specific clinical drug trial led to improvement in his treatment of Loeys-Dietz. “Everything from the treatments I use to the activities I do is impacted by research and progress that was made before I was even diagnosed,” he says. But the progress hasn’t stopped with Peter. Since getting his diagnosis and attending his first Marfan Annual Conference in 2006, Peter has been an active force in supporting others in the community. “Everything I do is to help people build connections,” he says. “I want people to see they aren’t alone, which is itself progress. Years ago, there was no such thing as a Marfan and related conditions community, but now we don’t need to figure everything out on our own.” The life-saving medical research supported by the Foundation has a profound impact on the entire genetic aortic condition community – whether someone’s diagnosis is Loeys-Dietz, Marfan, VEDS, or another related condition. Peter champions being part of this community because, as he’s realized, it’s a combination of medical advances and strong connections that lead to an improved quality of life. RESEARCH AND RELATED CONDITIONS “I want people to see they aren’t alone, which is itself progress. Years ago, there was no such thing as a Marfan and related conditions community, but now we don’t need to figure everything out on our own.”

q Peter Donato with his father, David, at a recent Marfan Foundation Annual Conference.

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Winter 2020