Turning Grief Into Purpose – Laurie Boyer, Chair of the Myositis Association
🟣 Rare Awareness Radio – A Podcast Dedicated to the Rare Disease Community
In this profoundly moving episode, Richard Juknavorian speaks with Laurie Boyer, Chairperson of the Myositis Association, about her personal and professional journey in rare disease advocacy.
After losing her brother to dermatomyositis with interstitial lung disease, Laurie transformed her grief into leadership—stepping into a national role to uplift, connect, and empower the myositis community. Laurie opens up about the early signs of her brother’s illness, the challenges her family faced navigating care, and the powerful impact of showing up—for loved ones, for other families, and for a cause bigger than herself.
Together, we explore:
What makes myositis so challenging to diagnose and treat
The power of interdisciplinary care in rare disease
Laurie’s path to board leadership at TMA
How support groups and affinity networks reduce isolation
Why storytelling, advocacy, and awareness are critical for change
What gives Laurie hope for the future of rare disease research and its community
💜 Whether you're newly diagnosed, a caregiver, or an advocate looking to make a difference, this conversation offers empathy, wisdom, and actionable inspiration.
🎙️ "No act is too small." – Laurie Boyer
🔗 To learn more or get involved, visit: https://www.myositis.org
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