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Rare Awareness Radio

Rare Awareness Radio

Auteur(s): Rare Awareness Radio
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 Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.All rights reserved Économie
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  • EP 26 Ed McGrath

    EP 26 Ed McGrath
    Sep 14 2025
    Rare Awareness Radio — Episode Title: One Step at a Time: Ed McGrath on Love, Advocacy, and Life with Myositis In this powerful episode of Rare Awareness Radio, we sit down with Ed McGrath, a passionate rare disease advocate, loving husband, and longtime partner to Marilyn McGrath, who lives with dermatomyositis—a rare autoimmune disease affecting the skin and muscles. Ed shares their deeply personal journey, beginning with the earliest signs of Marilyn’s illness during an anniversary trip, through a frustrating two-year search for a correct diagnosis. He recounts how they finally found hope and community through the Myositis Association (TMA), attending their first conference in 2013 and never looking back. You’ll hear about: - The emotional and physical toll of dermatomyositis - The impact of misdiagnosis and delayed care - The life-changing power of IVIG therapy - Navigating insurance and advocating for access - Ed and Marilyn’s role as mentors to newly diagnosed families - How community, education, and legislative action can spark change in the rare disease space Whether you're a caregiver, patient, clinician, or advocate, Ed's story is a testament to the strength of partnership, the importance of being your own advocate, and the real-world impact of rare disease awareness. 🔗 Learn more or get involved: 👉 https://www.myositis.org 👉 https://www.rareawarenessradio.org 🎙️ Hosted by Richard Juknavorian 💬 Subscribe, share, and help us amplify the voices of the rare disease community. #RareAwarenessRadio #Dermatomyositis #MyositisAwareness #CaregiverStories #RareDisease #PatientAdvocacy #IVIG #TMA #ChronicIllness #HealthEquity
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    33 min
  • EP 25 Laurie Boyer

    EP 25 Laurie Boyer
    Sep 1 2025
    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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    31 min
  • EP 24 Samuel M. Young, Jr., PhD

    EP 24 Samuel M. Young, Jr., PhD
    Aug 16 2025
    In this episode of Rare Awareness Radio, host Richard Juknavorian sits down with Dr. Sam Young, Director of the Gene Therapy Center at the University of North Carolina at Chapel Hill. From his early days as a Princeton football player turned molecular biology student, to training under Nobel laureates and leading pioneering labs across the U.S. and Europe, Sam has built a career at the cutting edge of gene therapy. His story is one of resilience, curiosity, and a willingness to tackle “generational questions” that few others dare to pursue. Together, we explore: The evolution of gene therapy from early setbacks to transformative breakthroughs. Why packaging limits in AAV vectors matter—and how new adenoviral approaches may unlock treatments for large, complex genes. The urgent challenges in treating rare neurological conditions like Ataxia-Telangiectasia and CACNA1A-related disorders. The importance of integration between scientists, clinicians, and patient advocates to bring new therapies forward. Dr. Young reminds us that the real heroes are always the patients and families, and that the responsibility of science is to create the world not as it is, but as it should be. 🎧 Tune in for an inspiring conversation about science, persistence, and hope for the rare disease community. For additional information on Sam Young, please visit - https://www.med.unc.edu/pediatrics/people/samuel-m-young-jr-phd/ To learn more about the CACNA1A Foundation, please visit - https://www.cacna1a.org/
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    50 min
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