Meet the Teen Council | The Marfan Foundation

Meet the Teen Council

The Teen Council is a subcommittee of the Foundation’s Board of Directors – so it’s really official! Teens can apply for the Council and 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:

THE TEEN COUNCIL

Grace

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.  

Rolfe

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. 

Michaela

I'm Michaela Hampton. I am seventeen years old and am from Pennsylvania. My brother was diagnosed with Marfan syndrome seven years ago (when he was almost twelve) and is the only person in our family who has Marfan. I enjoy reading, camping, swimming, learning and spending time with others. I'm excited to be a part of the Teen Council again this year! 

Nathan

Hey! My name is Nathan Kim. I'm 16 years old and in 11th grade. In my free time, I enjoy sports such as basketball and football. This is my second year on the Teen Council and I have really enjoyed it so far.  

Thomas

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! 

Sinclaire

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. 

Elizabeth

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.

Allegra

I'm Allegra Sturdevant, a 17 year-old from Northern Virginia. I was diagnosed with Marfan syndrome at the age of 7. I'm a senior at Middleburg Academy where I play tennis and am a part of the school's student council. I love photography, acting, and ice skating. This is sadly my last year on the Teen Council, however, I'm so grateful to have had this experience! 

Seth

Hi! My name is Seth Tennant. I am currently a senior at Tampa Prep Academy in Florida. I am 17 years old and was diagnosed with Marfan syndrome in 2010.  I had knee and arm surgery in 2013.  My hobbies include robotics, playing bass, maker projects, sailing, and film. I am always happy to meet new people and hear their stories.