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Meet the Teen Council

The Teen Council is a subcommittee of the Foundation’s Board of Directors – so it’s really official! Teens are appointed based on their demonstrated leadership qualities. As Teen Council members, we are expected to be role models for the teen Marfan and related disorders community and to participate as much as possible in national and local Foundation activities. Here’s what we do:



I am Grace Barnhart. I am 13 and live in the DC Metro area. My dad and I both have Marfan syndrome. I love to act in musicals and plays, am a cadet in Girl Scouts, and love to write and draw. This summer, I started a support group called Marfan Friends to help Marfan kids and teens know they are not alone.  


Hi! My name is Rolfe Flaherty. I'm a teen with big ideas -- most are to help people and improve their everyday lives. Being a part of the Teen Council can help me to do that, whether it’s through sharing my medical experiences or cheering someone up. I'm glad I have the opportunity to be there for others. I love music, video games, and hanging out with new and old friends. 


Hi, my name is Maggie Murphy, I’m 18 years old, and I live in New Jersey. I was diagnosed with Marfan syndrome when I was two years old and I’m the only one in my family with it. I enjoy art, reading, hiking, photography, and participating in advocacy around my community.


Hi! My name is Thomas Maddox. I'm 16 years old and I'm from Wichita, Kansas. I'm very passionate about playing music and furthering my faith in Jesus Christ. I'm very excited to be serving on the Teen Council! 


Hi! My name is Sinclaire Schuetze and I am 16 years old. I live in Lancaster, Pennsylvania, and was diagnosed with Marfan syndrome around the age of 3. I enjoy playing cello and piano, writing, and volunteering at my school and around my community. 


Hey! I’m Elizabeth Simon from West Virginia. I am currently a freshman at Wheeling Park High School. I am the first and only Marfan diagnosis in my family! I enjoy art, video games, music, and raising awareness for Marfan syndrome and related disorders.


Hi! My name is Anna Maddox and I’m 16 years old. I’m from Wichita, Kansas. My brother is clinically diagnosed with Marfan and I have a similar condition. I love music, singing, cheerleading and art :)


Hey! My name is Sam Woodhouse and I'm from Northwest Arkansas. I am the first and only person in my family ever diagnosed with Marfan. I'm a junior in high school and I love writing and performing music. I'm really excited for my first year on the Teen Council!