In 2024, I was honored to present my mother’s story at the Externally Led Patient-Focused Drug Development (EL-PFDD) meeting for adult dermatomyositis, hosted by The Myositis Association and Myositis Support and Understanding.

My reflections and advocacy were included in the official Voice of the Patient Report, which documents the real experiences of people and families living with dermatomyositis. I was quoted throughout the report and acknowledged in the dedication section to my mom.

Read the full Voice of the Patient Report (PDF) »

Titled: “Adult Dermatomyositis – Voice of the Patient Report”

“My mother’s bravery in facing dermatomyositis remains a guiding light in my life.”

💜 Part of the Look Mom Advocacy Project »