Connective Issues Spring/Summer 2026

For many teens living with Marfan, Loeys-Dietz, VEDS, Stickler, or a related condition, finding others who truly understand their experience can be life-changing. Through its teen program, the Marfan Foundation has created that space just for teens built on connection, learning, and support. “I facilitate the teen program alongside community member, volunteer leader, and longtime friend Peter Donato,” said Dominga Noe, who has been the Foundation’s teen program manager since 2021. “We facilitate the monthly virtual events and plan and execute the programming for both the virtual and in-person conferences.” For Dominga, the role is deeply personal. Having grown up in the teen program herself, she understands its impact firsthand. “The most rewarding part of leading this program is giving back to the program that changed my life,” she said. “I made lifelong relationships that have shaped my experience living with Marfan syndrome. It was a place where I could ask questions, connect with leading healthcare professionals, and meet incredible people, many of whom later became part of my support system when I went through open-heart surgery.” Through the teen program, she is focused on creating that same sense of belonging for the next generation and for the “chance to simply be themselves.” “Connecting with others who share similar experiences is incredibly powerful,” Creating Space for Teens to Connect, Belong, and Grow

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The Marfan Foundation

teen programs are very dear to my heart and have helped me in so many ways while navigating living with a connective tissue disorder. Through the teen programs, I’ve been able to get guidance from peers as well as adult leaders who have similar medical conditions. The programs also help teens make connections and friends with others our age that have had similar experiences. The monthly teen talks and game nights are an especially good way to get to know each other and talk about everything from interests to school to doctors’ appointments and medical conditions. I’ve been able to make many friendships through the teen program that have helped me get through some tough times where otherwise, I might have felt alone.” ~Hannah Dammann

Dominga said. “Teens can talk about their conditions if they want to, but they can also just hang out without having to explain their diagnosis.” That sense of connection is central to everything the program offers. Monthly events like Teen Game Night and Teen Talk provide regular opportunities to build friendships, ask questions, and learn from

peers and mentors. Teen Talk, originally created during the pandemic, has grown into a vibrant space for open conversation. As Dominga put it, “It’s a discussion for them and by them.” Teen Program Leaders Peter Donato and Dominga Noe 

GET INVOLVED!

Visit Marfan.org/calendar to sign up for Teen Game Night and Teen Talk. Register to attend the Global Virtual Conference, June 15-18, at Marfan.org/conference . Have questions? Reach out to the teen program managers at teen@marfan.org.

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