When 13 of the original 15 Rent cast members reunited on a festival stage in Kingston, NY, this August, there were lots of songs and lots of tears. After all, the emotional performances in front of thousands of fans marked the 30th anniversary of the groundbreaking Jonathan Larson musical.
There were also lots of purple bracelets.
“Remember Jonathan. Save Lives. marfan.org/LarsonLove” is printed on the purple band—a reminder that Larson’s life was tragically cut short at age 35 from an aortic dissection caused by undiagnosed Marfan syndrome on the night before Rent’s Off-Broadway preview. Marfan.org/larsonlove is a link anyone can share to help more people learn the signs of aortic dissection and Marfan syndrome.
All 13 cast members—and many in the audience—donned the bracelet. The Marfan Foundation is grateful to Adam Pascal, Anthony Rapp, Taye Diggs, Daphne Rubin-Vega, Fredi Walker-Browne, Wilson Jermaine Heredia, Byron Utley, Aiko Nakasone, Gilles Chiasson, Gwen Stewart, Kristen Lee Kelly, Rodney Hicks and Timothy Britten Parker for the show of solidarity and advancing awareness.
The original Rent cast family supported the Marfan Foundation family at The Festival, an inaugural Broadway-themed event held earlier this month that drew 2,875 attendees.
Rent’s original Joanne, Walker-Browne and her #RENTSTORIES The Podcast team provided space for Marfan awareness at their festival vendor booth, taped a Marfan-related awareness promo, and distributed 300 bracelets while chatting with attendees who stopped by. Her team asked a critically-important question “Have you every heard of Marfan syndrome?” and told Jonathan’s story of fatal aortic dissection, one-on-one, to great impact.
“Fredi’s efforts to support our mission at the Festival by reaching out directly to participants and inviting her fellow cast members to raise awareness were extraordinary. Each purple bracelet her team shared is a powerful reminder that Jonathan should be celebrating with us today. Medical awareness of the signs of both aortic dissection – and in his case an underlying cause of Marfan syndrome – are his life-saving legacy gift to the world,” said Marfan Foundation Chief Communications, Marketing & Digital Officer April Dawn Shinske who represented the organization at the festival.
“Jonathan didn’t know he had Marfan syndrome. And today, 30 years later, despite major advances in diagnosis, education and life expectancy, too many people still don’t know they have it—or that it puts them at roughly 250 times greater risk of life-threatening aortic dissection than the general population,” said Shinske.
“Knowing cannot eliminate aortic dissection risk in Marfan syndrome, but knowing is the first step toward the best possible chance at longevity. With appropriate monitoring, medications and planned surgery before an aortic emergency occurs, many people with Marfan syndrome can now have a life expectancy comparable to the general population. But that progress depends on recognition—so people can be diagnosed, connected to appropriate care and receive the medical monitoring that can save lives.”
Larson exhibited several physical features associated with Marfan syndrome, including disproportionate height, long limbs and fingers, an indented chest and flat feet. But he was never diagnosed. In the days prior to his death, he visited two New York City emergency rooms complaining of chest pain and dizziness, but was misdiagnosed with stress, flu or gastrointestinal issues.
Broadway pioneer Tim Weil, the original musical director of Rent, is the author of the new memoir Making Rent, which chronicles his close friendship and creative partnership with Larson. Weil has spent decades helping preserve Larson’s professional legacy. But he is also committed to another part of that legacy: making sure the truth about Larson’s death from aortic dissection—and its connection to Marfan syndrome—is not forgotten.
“The fact that [the cast] is still spreading Marfan awareness is further proof of how, without Jonathan, none of us would be where we are today, and we continue to honor his legacy through his life and his passing,” says Weil.
“The truth continues to break through about his cause of death. It’s vitally important to know that Jonathan’s death was due to Marfan syndrome…I personally will continue to spread the undisputed truth, and as part of that process keep Marfan awareness in the conversation.”
The purple awareness bracelets are now available from the Marfan Foundation for $5 each, giving everyone a way to carry this meaningful message with them while raising funds to support our mission – a portion of the proceeds from purchased bracelets will benefit the Foundation.
To learn more about aortic dissection, visit marfan.org/aorticawareness
To learn the signs in honor of Jonathan, or to make a donation in his memory, visit marfan.org/larsonlove
For more information about Marfan syndrome, visit marfan.org
Read more about Jonathan and Marfan syndrome at People
Music Director Says Jonathan Larson Would’ve Made Changes to ‘Rent’ (Exclusive)
Olivia Abel has been a strategic communications and editorial professional for more than 25 years. A passionate storyteller, she’s worked as a reporter at Vanity Fair and People magazines, written freelance business stories for The New York Times and spent a decade as Editor-in-Chief of Hudson Valley magazine. Olivia shares the stories of those affected by genetic aortic and vascular conditions in her current work as director of Integrated Marketing Communications at the Marfan Foundation.