Know the Signs, Fight for Victory

The Marfan Foundation Raises More Than $1.2 Million at Heartworks Gala to Support Life-Saving Programs and Services

The Marfan Foundation announced today that it raised more than $1.2 million last night at its 16th Heartworks gala in New York City. More than 500 people were on-hand as the Foundation honored the legacy of Jonathan Larson, the award-winning playwright of RENT, who died from an aortic dissection believed to have been caused by Marfan syndrome, and the Weill Cornell Cardiac Care Team – Drs. Richard Devereux, Leonard Girardi, and Mary Roman – who provide outstanding patient care and conduct research on Marfan syndrome and related disorders.

The star-studded night featured performances by three original cast members from RENT: Daphne Rubin-Vega, who portrayed “Mimi;” Fredi Walker-Browne, the original “Joanne;” and Timothy Britten Parker, who played “Gordon.” More than two dozen other cast members from the past 20 years of RENT performances joined them for an emotional performance of Seasons of Love, as Larson’s father, Al, and sister, Julie, looked on.

“Last night’s Heartworks gala was the most spectacular and most emotional event we have ever had,” said Karen Murray, President, VF Sportswear, Chair of the Board of The Marfan Foundation and corporate host of Heartworks. “We are so grateful to our friends and colleagues who joined us to pay tribute to our honorees and to support our life-saving programs and services that make life better for people living with Marfan syndrome and related disorders. It was also so meaningful to see so many people from our patient community in the room – from nearby and from as far away as Alaska.”

The master of ceremonies for the evening was the multi-talented actress and comedian Julie Halston. The audience included Tony Award-winning dancer and choreographer Ann Reinking, whose son has Marfan syndrome, and actresses Bebe Neuwirth and Christine Haag. The Honorable Michael R. Bloomberg, honorary chair of Heartworks since 2003, was also on-hand. The New York area business community – including the fashion, retail, finance, and media industry – were all well-represented and provided incredible support.

2016 Hero with a Heart Award Honorees

Jonathan Larson, whose mega-hit musical RENT ran on Broadway for an amazing 12 years, displayed many of the outward signs of Marfan syndrome, but had never been diagnosed. In the 20 years since his death, the Larson family has worked closely with The Marfan Foundation on a multi-pronged campaign to raise awareness of the signs of aortic dissection and how it is diagnosed and treated in the hospital emergency department. These efforts included creation of continuing medical education videos for the healthcare community and tools that patients can use to advocate for themselves in the emergency room.

The Division of Cardiology and Department of Cardiothoracic Surgery at Weill Cornell Medicine are major referral centers for patients and families with Marfan syndrome and related disorders. Dr. Devereux is Director of the Adult Echocardiography Laboratory at the Weill Cornell Center; Dr. Girardi is a Professor and Chairman of Cardiothoracic Surgery in the Department of Cardiothoracic Surgery; and Dr. Roman is a Professor of Medicine in the Division of Cardiology. These experts have evaluated and treated hundreds of patients with Marfan syndrome, familial aortic aneurysm, mitral valve prolapse, and related conditions. In addition, they have conducted extensive clinical research that has provided many insights into the features of these disorders and their treatment.

Heartworks has raised more than $12 million for the Foundation to date. The proceeds from the event are earmarked for the Foundation’s programs and services in the areas of education, patient support, and research.

The Foundation is grateful to its sponsors for their support of this event. They include Allen & Company, American Heart Association, Burlington Coat Factory, Carpenter family, Susan and Randy Falco, Global Brands Group, Sinclair Li, Macy’s & Bloomingdale’s, Ann Reinking, Ross Stores, Sholton & Witte families, Univision, and VF Sportswear.

Click here to see some of the photos from this incredible night.

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