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EP 25 Laurie Boyer

EP 25 Laurie Boyer

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 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 🔔 Subscribe to Rare Awareness Radio for more interviews that elevate the voices of rare disease patients, families, and leaders. #RareAwarenessRadio #Myositis #Dermatomyositis #Autoimmune #RareDisease #Caregiving #Advocacy #Podcast #LaurieBoyer #TMA #InterstitialLungDisease #PatientStories #MyositisAssociation
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