30 years ago today, his loved ones, the theater community, and the world lost Rent creator Jonathan Larson at age 35 due to undiagnosed Marfan syndrome – a genetic aortic and vascular condition that affects the body’s connective tissue and can put an individual living with the condition at roughly 250 times greater risk of potentially lethal aortic dissection than that of the general population.
Jonathan, like many who have yet to be diagnosed, was unknowingly in the most dangerous scenario: he was unaware of his condition or the fatal risk it could carry.
With diagnosis through expert providers and genetic testing that confirms Marfan syndrome, in 2026 people living with the condition can manage healthcare through medical supervision that includes a regular schedule of testing like CT scans. Many people living with Marfan syndrome today can expect longevity comparable to that of the general population when the condition is identified and regular expert care is received as early as possible.
The Marfan Foundation drives research, education and support – and builds community – to improve outcomes, save lives and empower all people to thrive who are living with Marfan, Loeys-Dietz, Vascular Ehlers-Danlos syndromes, and related genetic aortic and vascular conditions.
As we pause in gratitude for Jonathan Larson’s remarkable life and legacy, we urge everyone to know and share the signs of both Marfan syndrome and aortic dissection. From the moment signs of an aortic dissection appear, time is of the essence – generally urgent (S.T.A.T.) imaging and emergency surgery are necessary to enhance the potential for survival.
Please share our “Know the Signs” infographics (#KnowConnectThrive #MarfanSyndrome #AorticDissection) to help save lives, today and for many tomorrows to come.
If you or someone you love is living with Marfan syndrome or a related condition, the Marfan Foundation is here for you. We offer free virtual support groups, programs for people of all ages, virtual and in-person events, downloadable educational resources at marfan.org (available in 25+ languages) and more. Find programs and support at marfan.org/calendar. Send your non-emergency medical questions to marfan.org/ask to be connected with our team of nurses and information specialists (hay ayuda disponible en español). And visit our Marfan Foundation Community Companion AI tool for 24/7 answers to non-urgent every day questions: Got Questions? The Marfan Foundation Can Help! – Marfan Foundation
For media inquiries regarding Marfan syndrome or the Marfan Foundation, email April Dawn Shinske at brandcomms@marfan.org
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April Dawn Shinske is the Chief Communications and Marketing Officer for The Marfan Foundation. She is proud to lead a stellar integrated marketing and communications team and honored to help tell the amazing stories of our community members.