By The Marfan Foundation

With a global virtual audience including participants who introduced themselves in chat from Norway, India, and across the United States, Conference kicked off to great enthusiasm on the evening of June 17th. After The Marfan Foundation’s Board Chair Bert Medina and President & CEO Michael L. Weamer welcomed participants, Melissa Flint, PsyD, FT, CCPT set the tone for the week ahead during her talk, Improving Your Outlook & Making Connections.

“Give yourself grace and self-compassion,” said Flint who encouraged those living with genetic aortic and vascular conditions to “Lean into the proactive,” whether during Conference or when navigating the day to day. “I hope that for you, you’re in a place where hope flourishes despite the challenges that can come along,” said Flint. Flint also encouraged people to view the event as “a chance to meet people from all over the world in this format, that I would never otherwise get connected with. What an incredible blessing that might be,” said Flint.

Following Flint’s talk, a Personal Perspectives Panel gave community members Dominick Corso, Jerome Harper, Adriana Rivera, and Peter Donato the chance to share their viewpoints and build community.

Donato, citing Conference connections from across his years of attending “that will last for decades” said, “Throughout the years, my family and myself have leaned on the people we’ve met through this Foundation; to ask questions, find resources, and get other opinions.”

Harper’s words echoed Donato’s remarks about connection. “I attended my first conference back in Baltimore in 2014,” said Harper. “The way I always explain it is that it was the first time I felt like I could be myself. It was the first time I felt like I could talk about all those things that made me feel like I was unique and different…I couldn’t talk about it with family members or friends, but I was able to talk about my retina being detached, I was able to talk about the insecurities of growing up with longer fingers and being super tall and all of the things I suppressed throughout the years,” said Harper.

Dominick Corso likewise shared the importance of community, “You can’t live with VEDS alone said Corso.” At Foundation events, “You’re surrounded by people who understand your situation,” said Corso. Corso challenged his fellow community members to get involved in any way they could in order to deepen community ties.

Rivera encouraged everyone to spend as much time focused on what people living with Marfan, Loeys-Dietz, VEDS and related conditions can do, vs. any limitations, “I think its also really good to acknowledge all of the things we can do. Like, for one I can walk, I can run, I can dance…I love dancing, I can swim, I can speak up and articulate sentences, I’m smart. I have a job that I love, so I think it’s important to sit with the ‘can’s’ and with what we can do,” said Rivera.

Registration for Global Virtual Conference overall topped 1,800 people as of Monday morning. Sessions are happening throughout the week, save June 19th in observance of Juneteenth. To learn more, or check the scheduled, visit marfan.org/conference.

Watch the replay of our Opening Sessions here:
Global Virtual Conference 2024 Opening Sessions (youtube.com)

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The Marfan Foundation is a nonprofit organization that empowers people living with genetic aortic and vascular conditions to foster optimal quality of life and longevity. We save lives through research and education that enables healthcare providers to offer best-quality treatment. We serve communities impacted by Marfan syndrome, Loeys-Dietz syndrome, Vascular Ehlers-Danlos Syndrome and related conditions.To learn more, visit marfan.org or meet us on social media:

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