Broadway pioneer, musical director of Rent, author of new book, Making Rent, and friend of Jonathan Larson and family Tim Weil knows firsthand the tragic potential impact of undiagnosed Marfan syndrome.
“One of the many reasons I wrote the book was to make it clear, once and for all, that Jonathan didn’t die from HIV-AIDS (which, unsurprisingly, a majority of people still believe), but rather he died from an aneurysm and subsequent aortic dissection due to Marfan syndrome,” said Weil.
Weil’s book both tells inside stories of how Rent came to be the iconic show it is today and touches on the centrality of undiagnosed Marfan syndrome in the loss of Larson. Weil has been a friend to the Marfan Foundation alongside Larson’s family members for three decades; he sought the Marfan Foundation’s input while crafting his book.
The Foundation’s Chief Global Business Development Officer Eileen Novins, who was a public relations consultant during the era when Larson’s life was cut short, connected with Weil during his research for the book. “It was gratifying to share with Tim the Foundation’s involvement with the Larson family and the New York State Department of Health. It brought back memories of the sadness of the missed diagnosis, as well as the tremendous public and medical awareness of aortic dissection that resulted, most certainly saving lives. It was an honor to work with the Larson family on this aspect of Jonathan’s legacy and we truly salute Tim for continuing to bring awareness to Marfan syndrome,” said Novins.
The Museum of Broadway hosted Weil for the first-ever reading of Making Rent on February 18 in New York City – coincidentally amid Marfan Awareness Month globally. Weil was joined by alumni from the original Broadway production of Rent and subsequent productions.
Chief Communications and Marketing Officer April Dawn Shinske, who represented the Marfan Foundation at the event, said the book’s impact will help to make Marfan syndrome a mainstream concern though a rare condition, “The gift of Tim Weil’s book is that he is bringing awareness about the potential medical complications of Marfan syndrome – including those that can prove fatal like aortic dissection – to the world beyond the rare-condition community.”
“Everyone knows about Rent and the towering legacy of Jonathan Larson’s work. But thanks to Tim, more people will understand that simply knowing the signs of Marfan syndrome and aortic dissection saves lives through medical monitoring – and, in acute situations – through immediate (S.T.A.T.) medical imaging like CT scans and urgent surgical intervention. We are so grateful not only for Tim’s wonderful friendship, but also for the ways in which his words will undoubtedly spare other friends, families, and loved ones a loss as great as that of Jonathan Larson,” said Shinske.
Weil knows that Larson’s story remains a compelling call-to-action for the Marfan community and beyond in raising life-saving awareness among laypeople and the medical community alike. People living with Marfan syndrome in 2026 can often experience longevity comparable to that of the general population through early diagnosis and ongoing medical monitoring.
Those who are living as Larson was – unaware of their condition – are in the most danger; the risk of often fatal aortic dissection for people living with Marfan syndrome is roughly 250 times greater than that of the general population. By knowing the most common signs of Marfan syndrome and the emergency signs of aortic dissection, everyone from first responders to teachers to school nurses can make a life-saving difference.
“I still, to this day, marvel at how many lives Jonathan Larson changed and saved after his shocking death,” said Weil. “Who could’ve known that his work on earth and his passing were the most selfless acts one could bequeath to others? His memory will be etched on my heart and soul forever.”
To learn more about Tim and his book, Making Rent, visit: https://www.tim-weil.com/
Know the signs of Marfan syndrome: marfan.org/knowthesigns
Know the Signs of an Aortic Aneurysm and Dissection – Marfan Foundation (an urgent medical emergency – call 9-1-1 or seek emergency medical attention if 9-1-1 isn’t available where you live).
Learn more during Marfan Awareness Month: marfan.org/marfan2026
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.