Connect Issues Fall 2020


What do you get when you combine really cool sports cars with generous drivers who pursue their passion for cars with a cause that is close to our hearts? The result is the East Coast Run 2020, organized by Asa Gladstein of Boston, which raised $60,000 this summer for The Marfan Foundation. This is the second year that the East Coast Run raised money for the Foundation. Their two-year total is an incredible $80,000. Asa’s passion for the Foundation is due to his best friend, Dario Polci, who has Marfan. Asa saw all that Dario went through, including open heart surgery to repair his aorta while he was in high school, and reached out to the Foundation last year to form a life-saving partnership that not only raises critical funds, but also raises extensive awareness about Marfan on social media. In addition, all cars in the East Coast Run, which this year took drivers from Boston, through the Adirondacks, to Cleveland, displayed Marfan swag. “I love doing what I do,” said Asa. “We raise a bunch of money for a phenomenal organization, and then celebrate by doing what we love. We combine

p Daniel Friedrichs, who has Marfan, is one of the car enthusiasts who participated in the East Coast Run 2020.

our passions for giving back and driving cars. This is the result.” Want to learn more about Asa’s group, Squad Driv- en, which puts on this event, and get the details on the East Coast Run 2021 when they become avail- able? Follow Squad Driven on Facebook and Insta- gram. We encourage you to show your appreciation!


“I have had the honor of knowing Reed for more than thirty-five years, both as a patient and as a fellow volunteer and supporter of the Foundation,” said Ray Chevallier, a member of the Foundation’s board of directors who previously served as board chair. “Reed has always demonstrated an invaluable combination of traits: the clinician’s dedication to the well-being of the patient, the researcher’s unyielding desire to expand upon the body of

On behalf of all of us in the Marfan, Loeys-Dietz, VEDS, and related conditions community, The Marfan Foundation extends its deepest appreciation to Dr. Reed Pyeritz upon his retirement.

Dr. Pyeritz, who was most recently the William Smilow

Professor of Medicine and Professor of Genetics at the Smilow Center

for Translational Research at the University of Pennsylvania, is a founding member of The Marfan Foundation and has served as a member of its Professional Advisory Board (PAB) – including a stint as chair – since its inception. Throughout his 40+ year career, Dr. Pyeritz has been committed to research and patient care for those with Marfan syndrome and related conditions. He has been honored extensively by the Foundation for his many accomplishments that have helped to extend the life and enhance of the quality of life for people with these conditions. He will continue to serve on our PAB, which provides medical oversight and guidance to our programs and services.

p Dr. Pyeritz with the late Cheryll Gasner, RN, a nurse with Marfan who was also a co-founder of the Foundation.

medical knowledge, and the advocate’s passion to make the world a better place, particularly for those affected by connective tissue conditions. From his co-founding of the Foundation in 1981 to his current ongoing contributions as a member of the PAB, the Marfan and related conditions community has had no greater friend.” The Foundation wishes Dr. Pyeritz many years of good health and happiness with his wife, Jane Tumpson, and their children and grandchildren.


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