Courtney O’Brien

Patient representative

Courtney O’Brien has a M. Ed. in Special Education (birth-21), with a focus on severely and profoundly disabled students, as well as a BS in Psychology.

After years of seeking answers for chronic pain and unexplained injuries and illnesses, Courtney was diagnosed with hEDS, Cervical Instability, Chiari Malformation, Dysautonomia, and MCAD.

After her diagnosis, Courtney required several neurosurgeries and interventions to correct severe instability. She was forced to step down from her physically taxing teaching career to prevent further injuries, but still had the drive to help others and was determined to find a way to do so.

Today, Courtney enjoys volunteering her time with the Ehlers Danlos Society’s Community Coalition, Penn State’s Patient Advisory Group, and jumping in where she can to help out with various research projects in the field. In her free time, she loves spending time with her wife and young son, who has identical diagnoses to her own, as well as their two French Bulldogs.

Kara holds a Bachelor of Science from St. John’s University. 

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