Heartworks Across America, The Marfan Foundation’s signature event, will honor two incredible doctors, an outstanding volunteer leader, and the legacy of a Tony Award-winning actor, dancer, and choreographer on June 24, when Heartworks goes virtual.
The medical honorees who will receive a Hero with a Heart Award are Dr. James Black, Chief of Vascular Surgery and Endovascular Therapy at Johns Hopkins Hospital, and the David Goldfarb, MD Professor of Surgery at Johns Hopkins University School of Medicine, and Dr Firas Mussa, Professor of Surgery and Director of Vascular Research at the Zucker School of Medicine at Northwell Health in New York. Barbara Lerman, CPA, of Westchester, NY, is the recipient of the 2021 Karen Murray Inspiration of Excellence Award.
Heartworks Across America will also pay special tribute to Ann Reinking, who passed away suddenly in December 2020. The award-winning actor, dancer, and choreographer — best known as Roxie Hart in Chicago — performed on Broadway for three decades. She had been a force in the Marfan and related conditions community for more than 20 years, including serving as artistic chair of Heartworks for many years.
“Heartworks is an annual highlight for us and we are proud to be marking its 20th anniversary,” said Cory Eaves, Chair of the Foundation’s Board of Directors. “We are thrilled to bring it into homes from coast to coast this year, so we can all celebrate the achievements of our honorees. We congratulate them and thank our host, Karen Murray, our dinner chair, Sinclair Li, the gala leadership council, and all of our sponsors for making this extraordinary evening possible.”
Murray, who has served as chair of Heartworks since its inception, is proud of the $20 million the event has raised to date to support The Marfan Foundation’s life-saving programs and services. This year, she is more determined than ever to continue her efforts on behalf of her friend, the late Ann Reinking, who – like Murray – has a son with Marfan syndrome.
“Annie was a beacon of hope, a shining star in the Marfan community,” said Murray. “She was known to the world because of her incredible talent. To us, she was a treasured member of the Marfan family, and we all knew that her favorite role was that of mother to her son, Christopher. Her loss was incredibly difficult for our community and to all of us who were close to her.”
Jill Martin, ten-time Emmy Award winning television personality, will serve as master of ceremonies while several Broadway stars, including Ben Vereen, Joel Gray, Chita Rivera, and James Naughton, either perform or make cameo appearances to pay tribute to Ann Reinking.
For more information on tickets and sponsorships, please visit Marfan.org/hw2021 or contact Deborah Goodman at dgoodman@marfan.org or 516-883-8712, ext. 154.
The 2021 Honorees
Hero with a Heart
Dr. Black is an expert in the application of endovascular technology for people with aortic and vascular diseases. He has unique expertise in open surgical reconstruction and endovascular interventions for the vascular manifestations of all connective tissue conditions. He has given invited lectures on the subject of aortic diseases and connective tissue conditions to the White House Medical Unit and the FDA section in charge of cardiovascular devices. His research interests include the molecular events underpinning the development of aortic emergencies in both atherosclerotic and genetically triggered aortopathies. He serves on the Medical Advisory Board of the Loeys-Dietz Syndrome Foundation, a division of The Marfan Foundation.
Dr. Mussa is nationally and internationally recognized as a thought leader in the treatment of aortic dissection. He has published extensively on both basic and clinical research with a focus on technology implications in the treatment of aortic dissection. Dr. Mussa, who trained in aortic and vascular surgery at the Michael E. DeBakey Heart and Vascular Center in Houston, has a special interest in treating people with Marfan syndrome and other connective tissue conditions. He is currently leading the effort for the NHLBI to fund a large trial to study the most appropriate therapy for patients presenting with type B aortic dissection with and without genetic conditions. Dr. Mussa serves in a leadership position with the GenTAC Alliance, a division of The Marfan Foundation.
Karen Murray Inspiration of Excellence
Barbara Lerman had never heard of Marfan syndrome before her daughter, Sydney, was born in 2003 and immediately diagnosed with a very severe, life-threatening form of the condition. The Marfan Foundation became her lifeline, providing information, connections to other families, and access to the country’s leading doctors on the condition.
Despite Sydney’s significant medical challenges, Barbara quickly turned around to give back to the community. With her close friends and family, she created Heartworks Westchester and, over the course of eight years, raised more than $1 million for the Foundation. Barbara also connects with other parents of children with Marfan syndrome and offers support and advice. Together with Sydney and her older daughter, Carly, the family created the Sydney Lerman Pediatric Hospitality Program, which provides support for families while their child is hospitalized.
In addition, Barbara has been an extraordinary advocate for The Marfan Foundation, conducting holiday fundraisers and boutiques that not only raise funds but also increase awareness of Marfan syndrome and related conditions.
More about Ann Reinking
Ann Reinking’s contributions to the Marfan and related conditions community go beyond her leadership role with the Heartworks gala. Through The Marfan Question, a comprehensive Q & A video series for parents that she conceived, supported, and starred in, to the In My Hands documentary, which featured children with Marfan, she gave hope and inspiration to families around the globe. Annie was also a long-time supporter of the Foundation’s research program because she knew that the research meant hope for the future of Chris and all the other children with Marfan and related conditions.
The Marfan Foundation
The Marfan Foundation’s mission is to save lives and improve the quality of life of individuals with Marfan syndrome, Vascular Ehlers-Danlos syndrome (VEDS), Loeys-Dietz, and other genetic aortic and vascular conditions. We work tirelessly to advance research, serve as a resource for families and healthcare providers, and raise public awareness.
Learn more and get involved at www.marfan.org.
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.