Terri Ellsworth

Terri is a Duchenne muscular dystrophy and rare disease advocate whose work is deeply rooted in her experience as mother to her son Billy, who lives with Duchenne. For more than two decades, Terri has worked to elevate the patient and caregiver voice, advance access to clinical research and innovative treatments, and advocate for policies supporting the rare disease community. Her son participated in the clinical trial that led to the first FDA-approved treatment for Duchenne.

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