Marfan Foundation calls on theater community to honor Jonathan Larson’s legacy through social media
PORT WASHINGTON, NY — The Marfan Foundation is calling on the theater community, the Marfan community and the public to help raise awareness of Marfan syndrome and aortic dissection through its #LarsonLove campaign, marking the 30th anniversary of Rent and the tragic passing of its creator, Jonathan Larson.
Jonathan Larson lost his life at just 35 years old from an undiagnosed Marfan syndrome-related aortic dissection, a ripping or tearing of the aorta, before Rent made its Broadway debut on April 29, 1996. His sudden death remains a powerful reminder that genetic aortic conditions can go unrecognized—and become fatal without early diagnosis.
Join the #LarsonLove Challenge, Post a Video, Tag Your Friends
During this milestone anniversary year, the Marfan Foundation is honoring Larson’s legacy by mobilizing a movement to help more people recognize the signs of Marfan syndrome, understand the risks of aortic dissection, and take life-saving action.
Honor Jonathan Larson’s legacy by taking the #LarsonLove challenge in 3 easy steps. Make a quick video where you sing, lip sync, dance – whatever you love doing – to Seasons of Love. Mention Marfan syndrome and Jonathan, send everyone to marfan.org/larsonlove to learn the signs of Marfan and aortic dissection. Post to your social media, tag three friends asking them to take the challenge (and tag the Marfan Foundation, too – the Foundation will gladly share your post).
“We’re so grateful that the Larson family has supported the Marfan Foundation’s vital mission across the years and is in our corner now. They’ve granted the rights for us to use the iconic Seasons of Love as an attention-grabbing way to highlight the serious risk of undiagnosed Marfan syndrome and its potential to be lethal,” said Chief Communications & Marketing Officer for the Foundation, April Dawn Shinske.
“Now, we’re asking everyone who loves Rent, who loves Jonathan Larson’s legacy, who loves someone living with Marfan syndrome, and the general public to take the #LarsonLove challenge. If we make Marfan a well-known condition though rare, more people will be diagnosed and treated appropriately during emergencies of the type Jonathan so tragically endured.”
Why Marfan Syndrome Awareness Matters
Despite major advances in diagnosis, education, and life expectancy, many people still don’t know they have Marfan syndrome—or their high risk for a life-threatening aortic dissection. First responders may also miss the signs, especially in young, otherwise healthy individuals with sudden severe pain. The Marfan Foundation is working to raise awareness and promote earlier diagnosis to help save lives and improve long-term health outcomes.
The Power of the Theater Community
“The voices of high-profile people in the theater community amplify the voices of our community members who live with Marfan syndrome and their loved ones in a dramatic and important way. When you see super-talented people singing Seasons of Love on Instagram in tribute to Jonathan, you can’t look away! When part of their message is ‘Know Marfan’ – so many lives will be saved,” said Shinske.
When the cast of the 25th Annual Putnam County Spelling Bee – currently running at New World Stages in New York City – provided the Foundation with a #LarsonLove video recently (as part of their Bee Grams fundraiser for Broadway Cares Equity Fights AIDS – an equally important mission so close to the Rent community’s heart) the positive impact for Marfan awareness was immense and immediate in the digital space, according to Shinske.
“We are incredibly grateful to the cast of Spelling Bee who went above and beyond to support Jonathan’s life-saving legacy by taking the #LarsonLove challenge. We’ve had a massive uptick in social media awareness of the Marfan signs since we posted the cast’s terrific video. Fresh energy was created that opened so much dialogue. Community members are sharing the signs and sharing their stories in brand new ways; that’s so essential both to save lives and combat the feelings of isolation that can come with Marfan syndrome,” said Shinske. “Now it’s time to multiply that kind of impact. Through Jonathan’s legacy, we really can take Marfan into mainstream-level awareness.”
“We are urging everyone in the theater community – from students to community theater members, to well-known Broadway actors – to honor Jonathan by taking the #LarsonLove challenge. Think of the number of folks we can reach with the signs and the lives that will be saved! The potential to help is limitless, and I can promise the Marfan community will be taking the challenge with you!” said President & CEO of the Marfan Foundation Michael Weamer.
The Marfan Community’s Call to Action: Fulfilling Dreams
Grace Meyers – who kicked off the #LarsonLove challenge with the first community member video – said, “The #LarsonLove campaign means a lot to me because as a person with Marfan Syndrome, I deeply understand the need for awareness of this rare disease.”
“Jonathan Larson’s life was cut short due to not knowing he had Marfan Syndrome. Larson was a creative person who deserved to have seen his dreams come to life. With better awareness of this condition, Larson could have seen his dreams come true – and all of us with Marfan syndrome could see our dreams come true and live life to the fullest,” said Meyers.
Recognizing the Signs of Marfan Syndrome
Those who are living as Larson was – unaware of their Marfan syndrome condition – are in the most danger; the risk of often fatal aortic dissection for people with Marfan 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.
Everyone who has Marfan syndrome presents differently, but knowing the common signs makes a big impact when it comes sto earliest diagnosis, quality of life, and longevity. Some people may have visible signs, some less visible signs. Many folks with Marfan are tall with arm wingspans greater than their height, but some people are of average height. Having multiple signs of Marfan in one individual or a family history of sudden early death are reasons to seek diagnosis. Many people inherit Marfan, but in 25% of cases the condition is “first-generation” or “spontaneous” meaning there is no family history. Genetic testing is one of the most definitive ways, when paired with expert clinical diagnosis, to determine if someone has Marfan.
When the Marfan Foundation began its work in 1981, a diagnosis of Marfan often meant a vastly reduced lifespan, with community members being advised by many healthcare providers that they likely wouldn’t live past their 30s or 40s. Today, the average life expectancy for Marfan syndrome with appropriate medical monitoring is comparable to that of the general population. Diagnosis is the key first step to seeking the expert care needed to thrive into the elder years.
Why Aortic Dissection Awareness Saves Lives
Aortic dissection is often quickly fatal. Knowing the signs and taking immediate action are essential. Urgent surgical intervention is necessary to survival. When a person who has the signs of Marfan presents with sudden acute pain, emergency imaging such as a CT scan is a game-changer in terms of the potential to survive the event. Larson’s case was missed both in terms of Marfan and in terms of medical providers recognizing his aorta had torn or ripped. Anyone can experience an aortic dissection, so everyone should know the signs. Genetic aortic conditions like Marfan, Loeys-Dietz, and VEDS dramatically elevate aortic dissection risk. The Marfan Foundation supports the entire genetic aortic condition community through its mission to help more people know, connect, and thrive.
Marfan Foundation Professional Advisory Board member, Board of Directors member and expert in Marfan syndrome Dr. Alan Braverman explains why it’s so essential to recognize aortic dissection quickly.
“Acute aortic dissection is uncommon in the emergency department, but the consequences of missing it are catastrophic. Every clinician must approach sudden, severe chest, back, or abdominal pain with a high index of suspicion — particularly when the onset is abrupt, the pain is severe, and no clear alternative diagnosis is apparent. Importantly, not all patients fit the classic profile of aortic dissection,” said Braverman.
“Those with underlying genetic aortic conditions, such as Marfan syndrome, are often younger and lack traditional cardiovascular risk factors. Recognizing physical features, taking a thoughtful family history, and listening carefully to the patient’s description of pain are critical. Awareness of these at-risk populations can be life-saving. When in doubt, image early, because in aortic dissection, timely diagnosis and treatment saves lives,” said Braverman. Dr. Braverman is the Alumni Endowed Professor in Cardiovascular Diseases; Director Marfan Syndrome and Aortopathy Clinic; Director Neidorff Aortopathy and Master Clinician in Cardiology Fellowship Program; and Section Head General Cardiology at Washington University School of Medicine in St. Louis.
A Legacy That Continues to Save Lives
Jonathan Larson’s legacy in the medical world — beyond his immense theater legacy — is one of alerting everyone that young lives can be saved when everyone knows the signs and acts quickly.
“I still, to this day, marvel at how many lives Jonathan Larson changed and saved after his shocking death,” said Tim Weil, close friend of Jonathan and the Larson family, long-time supporter of the Marfan Foundation, and original musical director of Rent. “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.”
👉 Learn the signs of Marfan syndrome and aortic dissection at marfan.org/larsonlove Early awareness saves lives.
Media Contact:
Chief Communications and Marketing Officer for the Marfan Foundation
April Dawn Shinske at brandcomms@marfan.org
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.