raising awareness since 2007
They are working hard behind the scenes by participating in fundraising, advocacy, and awareness programs with Bobby Jones CSF. We appreciate their hard work.
Check out what our Ambassadors are doing to help make a difference!
Roman Fenner is a 23-year-old originally from Richmond, Virginia. Roman has been involved with the foundation since the mid-2010s, where he volunteers for his local Unite @ Night walk, attends educational lectures, delivers his testimony as a patient speaker, and lobbies his local and state representatives for increased funding and awareness for Chiari, Syringomyelia, EDS, and related disorders during yearly Unite @ the Hill events. In the summer of 2020, Roman began leading the virtual High School/College support group, which has met monthly since.
Roman graduated with a Bachelor of Science from Davidson College in May 2022, where he double majored in Biology and Music. He has spent the past year performing vaccine immunology research at Duke University and is excited to begin pursuing his MD/PhD at the Medical University of South Carolina in the summer of 2023. Roman’s goal is to become a physician-scientist, studying and treating the neurological comorbidities of Ehlers-Danlos syndrome.
Noah Forman is a 16-year-old from Boca Raton, Florida. Noah was diagnosed with Chiari malformation and syringomyelia at the age of twelve. Since his diagnosis, he has been on a mission to increase funding and support for these rare diseases. With the help of the Bobby Jones CSF foundation, he originated the only Chiari 5k in the country. His inaugural race this past September raised $38,000 and had over 400 participants. Additionally, he is the host of The Chiari Champion podcast which is the most listened-to and far-reaching podcast related to these disorders with downloads nationally and internationally. He has been published in the Jewish Journal(on Cover), the Boca Raton Magazine, the Boca Raton Observer, and the Palm Beach Illustrated. His efforts have been recognized on ABC Channel 25 news multiple times. He will continue the 5k event annually and it will take place on December 3rd of this year. Noah also attended unite@thehill in May where he lobbied congressional and state representatives to join the rare disease congressional caucus and vote yes for the Help Co-Pays Act.
Noah plans on studying finance and entrepreneurship in college and attending a joint JD/MBA program. He is currently in a fully immersive dual-enrollment college program for high school with an emphasis on research and science. He will be graduating from high school one year early (spring of 2024) and will have accumulated 60 college credits by his time of graduation. He hopes to continue to help the Chiari community by raising awareness everywhere he goes!
CHIARI CHAMPION PODCAST: Listen on Apple or Spotify
Braeden Means is a 16-year-old Bohemia Manor High School student from Elkton, Maryland. Braeden was diagnosed at a young age with Ehlers-Danlos Syndrome, Chiari Malformation, and primary immune deficiency which steered Braeden away from the sports he was interested in and led to his discovery of his love for music. Braeden began playing guitar and singing at 8 years old. The first time Braeden played in front of a crowd was at a unite@night walk and he has loved entertaining ever since. He has been involved with the foundation since 2016 with his local unite@night walk through raising funds, assisting with set-up, and providing the music through his singing and guitar. He has also shared his story as a patient speaker. Braeden joined the foundation in D.C. at the unite@thehill event to lobby his local and state representatives for increased funding and awareness for Chiari, Syringomyelia, EDS, and related disorders. In 2020, Braeden assisted with the monthly virtual children’s support group, providing support for young kids who shared his illnesses.
