Connective Issues Winter 2025

AMOTHER’S ADVOCACY JOURNEY for Awareness and Research Never underestimate the power of a mother on a mission to help her child. What has evolved into 25 years of transformative fundraising on behalf of the Marfan Foundation and its divisions began with Karen Murray’s initial quest for answers. “I knew early on there was something wrong with my son,” said Karen. “I begged the doctors to help, but no one would listen.”

 Karen presents Dr. Duke Cameron with an award in 2022

Karen's son Michael was ultimately diagnosed with Marfan syndrome, and her desire to find answers – not just for her own family but for the genetic aortic and vascular conditions community at large – inspired Heartworks, the Foundation’s premier fundraising gala that supports vital programs for the Marfan, Loeys-Dietz, VEDS, and related conditions communities. Heartworks celebrates its 25 th anniversary in 2025 with our June 3 gala in NYC. ★ Seeking a Diagnosis Karen’s son Michael was born full term, but some concerns were immediately apparent. Unlike other babies in the nursery, whose hands were curled into little fists, Michael's knuckles were bent backwards. He couldn’t hold a bottle or close his fists. Karen knew that something wasn’t right. Soon, Karen was told that Michael had a dislocated hip and an indentation in his chest bone. Although these findings worried Karen, healthcare providers assured her he was fine, and he was discharged from the hospital. “As a toddler, he frequently suffered from colds, congestion, and respiratory issues like RSV,” said Karen. “He was also too tall compared to most children in Kindergarten. I asked the doctors if there was a condition that could make him grow too fast. I kept taking him to doctors about these issues and was told to calm down and that if he doesn’t grow, that’s a problem.”

It wasn’t until much later, after gathering Michael’s medical records, that Karen discovered the doctors had labeled her as an anxious mother. When Michael turned five, Karen purchased a computer for him that came with a CD titled Family Doctor . As she scrolled through every rare condition on the CD, she came to Marfan syndrome. The description mentioned that children with the syndrome could be taller than their peers, have disproportionately long limbs, contracted fingers and toes, and chest bone di ff erences. Most alarmingly, the syndrome could result in weak connective tissue and a risk of aortic tears, which could cause sudden death. “I panicked and took him straight to a New York City hospital and told them my son has this condition,” said Karen. “They still didn’t take me seriously until I demanded an echocardiogram. After the echo, they came out white as ghosts and said his aorta is twice the size it should be at 2.4cm. They diagnosed him on the spot.” ★ Search for Answers Leads to HeartWorks In 1997, Karen attended her first Marfan Foundation Conference in California, where she met Carolyn Levering, the Foundation's then President and CEO. The experience was overwhelming, but it also marked the beginning of

 Michael holds one of the resin art items in 2000

 Broadway stars Bebe Neuwirth and Ann Reinking in 2017

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