Today the Marfan Foundation honored the winners of its Hero With a Heart Award. The ceremony took place as part of the fifteenth Heartworks gala event in New York City. The foundation’s Board of Directors, which includes Karen Murray, Mary J. Roman, and Cory Eaves, has been instrumental in promoting the nonprofit’s work and honoring the people doing it.
Carolyn Levering, Emeritus CEO of the Marfan Foundation, was celebrated for her 20 years of work educating the public about Marfan syndrome and related disorders. Under her leadership, the foundation grew from a grassroots organization to a large, successful nonprofit focusing on supporting the 200,000 people in the US living with Marfan syndrome.
Isaiah Austin, a promising Baylor University basketball star, had his career cut short when he was diagnosed with Marfan syndrome just before the 2014 NBA draft. Since then, he has been an inspiration to those suffering from the condition, working hard to bring it to public attention. He received the award in appreciation for his efforts to inspire others and raise the profile of the condition.
“We are thrilled to honor Carolyn for her 20 years of service to the foundation,” said Murray. “Under her leadership, the foundation has truly made life better for people with Marfan syndrome and related disorders, including my son.” Of Austin, she said, “He is a quality individual who is an outstanding role model for our children and teens.”
Marfan syndrome is a genetic disorder that affects the connective tissue in the body. It is caused by a defect in the protein fibrillin-1, with elements of the disorder showing up most often in the heart, blood vessels, bones, joints, and eyes. Some features of the disease, such as aortic enlargement, can be life threatening.
The Heartworks events have raised more than $10 million to date for the Marfan Foundation, which goes toward education, patient support, and research. Sponsors include the American Heart Association, CRBE, Cushman & Wakefield, Macy’s, Nautica, and VF Sportswear.