Honoring Heart, Hope, and Progress
The 26th Annual Heartworks fundraising gala in New York City brought together more than 375 supporters, honored extraordinary advocates, and raised more than $1.5 million to advance the Marfan Foundation’s mission.
For 45 years, the Marfan Foundation has been driven by a simple but powerful belief: that no one should have to face life with a connective tissue condition alone. That mission was celebrated on June 9, 2026, when supporters gathered at the iconic Cipriani 42nd Street for Heartworks NYC 2026, an evening honoring the Foundation’s four plus decades of progress while raising critical funds to fuel the next generation of research, education, and support. More than 375 supporters—including longtime volunteers, donors, healthcare professionals, and researchers–powered progress for the Marfan syndrome, Loeys-Dietz syndrome, VEDS, Stickler syndrome, and related conditions communities. The event celebrated the Foundation’s milestone anniversary as sponsors and donors invested in the mission’s future.
During his remarks, Marfan Foundation President & CEO Michael L. Weamer said, “When this Foundation began in 1981, families facing Marfan syndrome had few answers, limited treatment options, and little hope. Together, we have transformed that reality. We have invested more than $23 million in research, helped drive groundbreaking discoveries, and built a global community grounded in support, education, advocacy, and hope. We have connected millions of people to trusted resources and expert care. Because of that progress, today many people with Marfan syndrome and Loeys-Dietz can expect to live as long as the general population—something that once seemed impossible. We are working to create that same transformational future for people living with VEDS!”
The celebration became even more memorable near the beginning of the program when emcee CBS Sports and TNT sportscaster Tim Doyle shared about his son who lives with Marfan, “Chicago” Joe, and then led the entire room in singing “Happy Birthday” to attendee Sofia Maria, who lives with VEDS – celebrating her sixth birthday. The joyful moment captured the warmth and sense of community that defined the evening – and that consistently defines the Marfan Foundation. Said her mother, board member Sofia De la Garza: “That was a moment I will never forget. Seeing so many people celebrate her, cheer for her, and surround her with so much love filled my heart beyond words. Being a part of The Marfan Foundation is one of the greatest gifts to our family.”
Attendees enjoyed an evening of celebration: cocktails, dinner, and dancing with entertainment by Electric Avenue. A spirited live auction and fundraising appeal led by auctioneer Harry Santa-Olalla raised the energy in the room and helped propel Heartworks NYC to a remarkable milestone: more than $1.5 million raised in support of the Marfan Foundation’s mission.
But people remained the heart of the evening – which was co-Chaired by board member and Heartworks Founder Karen Murray, Sinclair Li, board member Bryan Maher and Sara Maher; medical chair of the event was Dr. Leonard Girardi.
One highlight was the presentation of the Inspiration of Excellence Award to Alan Braverman, MD, and Rebecca Braverman. Dr. Braverman, Director of the Marfan Syndrome and Aortopathy Center at Washington University School of Medicine and Barnes-Jewish Hospital, has a personal connection to Marfan syndrome: both his father and brother died from complications of the condition. Together, Alan and Rebecca have been longtime champions of the Foundation’s mission, co-founding the annual St. Louis HeartWorks gala in 2008 and often taking their two daughters to Marfan events around the country. “It’s not a job,” said Dr. Braverman. “It’s the way our lives are.” The Bravermans were feted by Murray and Marfan Foundation co-Founder, Dr. Reed Pyeritz.
The Foundation also honored Jim Prutow and Roe Nania with Hero with Heart Awards. Jim was just 14 years old when he lost his father to complications of Marfan syndrome. Over the decades, he has become one of the Foundation’s most dedicated supporters and fundraisers, founding the popular Uncorked wine-tasting fundraiser and helping advance the mission in countless ways.
For Roe, advocacy grew from personal loss. Her older brother died of VEDS at age 35 before three nieces and another brother were diagnosed with the condition. “And then I realized I can’t sit around and watch this. We have to figure this out,” she said. Figuring it out meant becoming a source of strength for her family while raising awareness, hosting fundraising comedy nights, and founding her own nonprofit organization.
Jim and Roe were honored with remarks from immediate-past Foundation Board Chair Cory Eaves and Deputy Executive Officer Helaine Baruch.
Special video tributes celebrated each honoree’s impact, featuring personal reflections from colleagues, friends, and members of the community whose lives have been touched by their leadership and service.
The 30th anniversary of Rent’s opening and creator Jonathan Larson’s passing due to Marfan syndrome was commemorated with a video from the off-Broadway cast of the 25th Annual Putnam County Spelling Bee. Original Rent Musical Director Timothy Weil and original “Joanne” Fredi Walker-Browne attended the gala alongside Jonathan’s sister, Julie Larson.
One of the evening’s most motivating moments came when three remarkable young members of the Foundation community—[Philip, [Gianni], and [Milan]—were recognized on stage. Representing the Marfan syndrome, VEDS, and Loeys-Dietz syndrome communities, they offered a powerful reminder of the people at the heart of the Foundation’s work. The boys’ family stories were shared via a Voices for Victory video, with themes around the difficulties connective tissue conditions present and the hope for brighter tomorrows through research, and eventually, cures.
Weamer affirmed that the present moment is a time when research is poised to transform care in new ways.
“As we look ahead, I am reminded that our greatest achievements are on the horizon. While our work is far from finished, the future has never been brighter. New technologies, discoveries, and opportunities are accelerating progress in ways we could only imagine 45 years ago,” said Weamer.
Board Chair Bert Medina closed the evening with a toast to 45 years, “As someone living with Marfan syndrome, I know firsthand that this Foundation is much more than an organization. It is a source of knowledge, support, friendship, and strength. For so many individuals and families, it truly is a second family,” said Medina.
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.