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Advocacy in Action: Using Your Voice to Create Change
Read more: Advocacy in Action: Using Your Voice to Create ChangeIn August 2026, I joined Myositis Support & Understanding (MSU) for a panel discussion at the MyoConnect Virtual Summit. I shared how advocating for my mom during her experience with dermatomyositis ultimately shaped my own path into advocacy. During the conversation, we discussed advocating in healthcare settings, the role of storytelling, finding your own way…
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Featured Interview: Dermatomyositis.com
Read more: Featured Interview: Dermatomyositis.comSharing Lulu’s Story with Dermatomyositis.com In 2026, I had the opportunity to participate in a filmed interview with Dermatomyositis.com about my mom, Lulu, and her experience with dermatomyositis. In the interview, I share parts of her journey, the impact her illness had on our family, and how losing her ultimately led me to begin sharing…
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Myositis Hero: MSU Video
Read more: Myositis Hero: MSU VideoView this post on Instagram A post shared by Myositis Support and Understanding (@myositis)
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A Tribute: MSU Video
Read more: A Tribute: MSU VideoView this post on Instagram A post shared by Myositis Support and Understanding (@myositis)
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Speaking at the FDA’s Patient-Focused Drug Development Meeting
Read more: Speaking at the FDA’s Patient-Focused Drug Development MeetingIn 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…