Connect Issues Fall 2021

DOUBLE RARE Riley O'Brien of Magnolia, New Jersey, was born with a rare condition known as heterotaxy, which affects the position of the body’s organs during gestation. His parents were told he’d need a heart and lung transplant to live past five years of age. He was fortunate to receive the new organs one month before his fifth birthday at Children's Hospital of Philadelphia, where he still receives transplant care from Dr. Joseph Ros- sano, Chief of Pediatric Cardiology, and Dr. Maureen Josephson, Medical Director of the Lung and Heart/Lung Transplant Programs, and now from Dr. Stacey Drant and Dr. Staci Kallish for his Loeys-Dietz syndrome. The O’Brien family knows what it means to live with a rare condition with years of treatments and surgeries. This past year, Riley learned that he also carries the SMAD2 mutation, making him a double rare carrier of both heterotaxy and Loeys-Dietz syndrome markers. The LDS diagnosis has helped the family make sense of some of what Riley has experi- enced over the years. It has also highlighted what a fighter he is, having been through so much and living a happy life. “When you see Riley, see that there is hope. When it comes to these conditions, there are a lot of statistics that feel hopeless. But then here’s Riley, beating every statistic and every odd every day,” said Riley’s mom, Carol O’Brien. More of Riley’s story and links to his social media accounts (@Smile4Riley) are at LoeysDietz.org/Stories .

THE FOUNDATION ADDS CLOVER HEALTH EXECUTIVE AS BOARD ADVISOR

The Marfan Foundation is pleased to announce the addition of Andrew Toy, President and Chief Technology Officer of Clover Health, as an advi- sor to its Board of Directors. Toy, a Hong Kong-born technologist and entrepreneur who is now based in California, was diagnosed with Marfan syndrome at 17 years old, after losing his father to an aortic dissection. Several times a year for the past 25 years, Andrew has visited his doctor to manage his condition; these ongoing interactions have instilled in him a deep understand- ing of the shortcomings of the healthcare system and a desire to fix the industry’s toughest problems. Andrew’s first-hand experiences have influenced the way he leads Clover Health, a company focused on bringing high-quality, affordable healthcare to underserved populations across the country. Now he is bringing his experience, passion, and expertise to The Marfan Foundation. As an advisor to the Foundation’s Board of Directors, Andrew aims to provide support and education to the community and help drive forward

research to create a brighter future for people with Marfan syndrome and other genetic aortic and vascular conditions. “One of my first experiences with the U.S. health insurance industry was them trying to deny me coverage for my annual scans on account of Marfan being a pre-existing condition. Fortunately, I was able to overcome that, but it has shaped a lot of how I see the health system. That’s why I’m dedicating my life to helping those with complex care needs and other at-risk populations get better, more affordable healthcare.” said Andrew. “I’m excited to help raise awareness and promote research around the treatment of Marfan syndrome and related conditions, and look forward to collaborating with the foundation as a new board member.” “We are excited to have Andrew join our Board of Directors as an advisor,” said Michael Weamer, President and CEO of The Marfan Foundation. “He brings energy, commitment, personal knowledge and a key expertise in health care delivery to underserved populations to our policy deliberations.”

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Marfan.org