Know the Signs, Fight for Victory

“If This is the Future of the Foundation, Then Victory is Around the Corner!” Teen Council members are leaders and role models

The Marfan Foundation’s Teen Council is a force to be reckoned with now. And they are clearly our future movers and shakers. This group of teens – who either have Marfan or a related disorder or have a sibling who is affected – is the voice of our adolescent community. Their primary focus is planning for the annual conference each summer; however, plans are underway for even greater involvement throughout the year.

The current members of the Teen Council are: Owen Gray, of Texas; Michaela Hampton, of Pennsylvania; Nathan Lim, of California; Liam Nelson, of Georgia; Allegra Sturdevant, of Virginia; and Seth Tenant, of Florida.

“My main goal for being on the Teen Council is to help other teens find support systems to help encourage them,” said Michaela, whose brother has Marfan syndrome. “By being a friendly face, we teens can help others form friendships that will last a lifetime.”

The members of the Teen Council are leading the way in planning the teen program at the conference this year. They selected the workshops and speakers (such as family planning with Dr. Melissa Russo, Baylor College of Medicine), selected the locations to visit on the teen trip (including World of Coke and the College Football Hall of Fame), and made decisions about the social activities they want at the conference. They are also hosting a meet and greet at the conference for teens who are attending for the first time.

Being on the Teen Council because it allows me to take an active role in an organization I really love,” said Liam. “It also allows me to help design the best experience for kids like me who attend the conference so they can best make lasting memories.”

After the conference, the Teen Council will focus on fundraising and awareness opportunities throughout the year. They will also be part of a new mentorship program the Foundation is starting.

“I wanted to be on the Teen Council because spreading awareness has always been really important to me” said Allegra. “After my term as a Teen Council member ends, I want to stay as involved as I can with the Foundation to raise more awareness and become more involved in my local area.”

“The teens continue to impress me with their maturity and ability to see the best in every situation. Articulate, creative and fun, each of the Teen Council members are future leaders in their own right. I’m grateful to spend time with them and am in awe of their endless enthusiasm and friendly demeanor,” said Lou Arias, who co-chairs the Teen Council with Board member Maya Brown-Zimmerman. “If this is the future of the Foundation, then victory is around the corner!”

If your teen wants to get connected to other teens in the Marfan and related disorders community, please have them contact Diane McKenzie,

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Diane McKenzie, MHA, the Program Manager at The Marfan Foundation. She can be reached at or 516-883-8712, ext. 136.

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