Connective Issues Winter 2025

 The cast of Chicago performing in 2003

 The Floyd family highlighting community support in 2006

★ A Lifelong Commitment For Karen, supporting the Marfan community became a central part of her life, one she describes as integral to her identity. Her dedication stems from her commitment to her son and the community as a whole. “Being a part of this journey with the Foundation has changed me in every way shape, and form,” said Karen. “I have so much empathy for everyone related to the cause, especially those with Marfan syndrome and related conditions. It’s my

Karen’s journey to support the Marfan community. She worked in the apparel industry and be gan leveraging her connections to raise funds. The following year, she helped launch a fundraiser called the Marfan Artist Project, where artists decorated resin hearts that were auctioned o ff . The inaugural event raised $50,000 through ticket sales and auction items. Over the years, the fundraiser grew, evolving into HeartWorks. Ticket prices increased, and

 In 2008, then Mayor Michael Bloomberg presenting Dr. Hal Dietz with an award

the event expanded, attracting more attention and support. In 1998, Broadway star Ann Reinking, whose son also had Marfan syndrome, helped bring in entertainment, including performances by casts from Rent and Chicago.

everyday life, so I understand.” According to Karen, there’s nothing that is more important than raising awareness and money for the cause, “It’s a part of my fabric, a part of my being. I will do what I can to be present at every gala for the rest of my life.” The most rewarding part for Karen is meeting families and world-renowned doctors and researchers. She also cherishes the friendships she has built with other Marfan mothers, who have become a vital support network. “I’m so grateful for the incredible healthcare providers like Dr. Duke Cameron, Dr. Hal Dietz, and Dr. Alan Braverman; when I think of these doctors giving their time, I am – WE are – so fortunate,” she said. ★ Advocacy Advice Her message to others looking to make an impact is simple: get involved. She encourages people to reach out to organizations like the Marfan Foundation, find local events, and contribute in any way possible. “It doesn’t matter how big it is, it’s about getting involved on any level and feeling like you’re making a di ff erence, helping others, and saving lives,” she said.

Donations surged, reaching millions. ★ HeartWorks Funds Growth

“Initially, everything was about raising awareness because few people knew about Marfan syndrome,” said Karen. “My goal was to make it a household name, but as my son started getting older, he needed surgery. That’s when my focus shifted toward funding research to improve surgical outcomes.” Donations fueled the Marfan Foundation’s growth, enabling it to o ff er more resources like conferences, camps, and webinars and to extend reach beyond the United States. The Foundation also expanded its sta ff andscope to include Loeys-Dietz, VEDS, and related conditions. “HeartWorks is a heartfelt gathering that has helped growourcommunity,”Karensaid.“Thegenuineconnections forged at these events has made them more authentic and impactful.” “It’s a part of my fabric, a part of my being. I will do what I can to be present at every gala for the rest of my life.” ~Karen Murray

Join us at a HeartWorks Gala in New York, St. Louis, Houston, or Chicago – Marfan.org/events.

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Winter 2025