While individuals with FSH muscular dystrophy are typically diagnosed in the late teen or adult years, many recall having subtle symptoms during childhood that went unnoticed. However, an estimated 10% of individuals with FSHD have an early onset form with more obvious symptoms that lead to a diagnosis before the age of 10. These early onset FSHD individuals have a different disease trajectory and more severe motor and extraocular symptoms. In this webinar, Tina Duong will provide an overview of the current understanding on the multi-organ impact of early onset FSHD and disease progression based on published literature of multiple natural history studies. We will discuss outcome measures and their applicability for disease characterization, care management, and clinical trials readiness.

Dr. Duong is a research physical therapist at Stanford University specializing in understanding and developing outcome measures used in examining the natural history of neuromuscular diseases as part of clinical trials readiness. Her doctoral studies focused on effects of contracture development on musculoskeletal and biomechanical changes associated with function. She hopes to build and continue her pursuit in understanding the benefits of rehabilitation and exercise as conjunctive therapies in neuromuscular disease.

For more information, visit www.fshdsociety.org