Jennifer Tjernagel was introduced to the world of Ehlers-Danlos syndrome when her teenage son was diagnosed with Vascular EDS (vEDS) in early 2017.
While relatively new to the life management challenges that come with an EDS diagnosis, she spends a significant amount of time navigating the world of rare disease in her role of Senior Project Manager at the Simons Foundation, where she manages natural history study data collection and patient registries for many genetic disorders associated with Autism Spectrum Disorder and other neurodevelopmental disorders.
Before her work with the foundation, Tjernagel spent ten years in the pharmaceutical industry as an associate director of statistical analysis and reporting at Pfizer Global Research and Development, and also worked as a biostatistician for the University of Michigan Cardiology Department. She earned an undergraduate degree in mathematics from the University of Notre Dame, and an M.S. in biostatistics from the University of Michigan.
She joined the board in 2018, and is also a member of the vEDS Collaborative group led by Sherene Shalhub and Peter Byers at University of Washington. She aims to share the perspective of the vEDS community and supports research advancements in identifying effective treatments for all forms of EDS.