Patient Events

Charleston, South Carolina In-Person Educational Lecture

Date : May 25, 2023

Location: Medical University of South Carolina, 68 President Street, Bioengineering Building, Room 112, Charleston, SC 29403

Time: 5:00 p.m. Patient to patient discussion group
6:30 p.m. Educational Lecture

Expert Speaker: Roman Fenner, Bobby Jones CSF Young Adult Ambassador

Topic: “Hope on the Horizon; A Future Where Patients Lead the Charge Against Hypermobility Ehlers-Danlos Syndrome “



Roman Fenner

Roman Fenner

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.