• Chief of Policy, Advocacy, and Patient Engagement at EveryLife Foundation for Rare Diseases since 2019.
• Possesses nearly three decades of experience in the rare disease community, including leadership roles at Parent Project Muscular Dystrophy and Muscular Dystrophy Association.
• Helped lead legislative efforts for the MD-CARE Act (2001, 2008, 2014) and the Patient Focused Impact Assessment Act, which became a provision in the 21st Century Cures Act.
• Engages with the FDA and industry on regulatory policy and therapeutic pipelines, including access efforts for Duchenne therapies.
• Serves on multiple boards and advisory councils, including the Board of Directors of Cure SMA and the NIH National Center for Advancing Translational Sciences (NCATS) Advisory Council.
• Holds an educational background in Biopsychology.

Biography