Rare Awareness Radio

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  • Resumen

  • Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.
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Episodios
  • EP 14 Jonathan Vargas

    EP 14 Jonathan Vargas
    Apr 20 2025
    Fighting for Juju – A Father's Mission to Raise Awareness for CLN2 Batten Disease In this powerful episode of Rare Awareness Radio, we sit down with Jonathan Vargas, co-founder of Juju and Friends: The CLN2 Warrior Foundation. Jonathan shares his family's emotional journey after his son, Juju, was diagnosed with CLN2 Batten disease—a rare, neurodegenerative condition. From heartbreaking hospital stays to launching a nonprofit advocacy group, Jonathan’s story is one of resilience, relentless love, and the drive to make a difference not just for his own child, but for families everywhere facing rare diseases. 🎙️ Don’t miss this heartfelt conversation about advocacy, hope, and the power of never giving up. 🔗 Learn more: https://give.rarevillage.org/campaign/juju-and-friends-cln2-warrior-foundation/c386658 #RareDiseaseAwareness #CLN2 #BattenDisease #RareAwarenessRadio #ParentAdvocate #JujuAndFriends #DisabilityAdvocacy #HopeForJuju
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    22 m
  • EP 13 Maura McNamara

    EP 13 Maura McNamara
    Mar 20 2025
    In this powerful episode of Rare Awareness Radio, host Richard Juknavorian sits down in person with Maura McNamara, a devoted mother, healthcare professional, and now author, as she shares her family’s emotional journey through Opsoclonus-Myoclonus-Ataxia Syndrome (OMAS)—a rare and often misunderstood pediatric neurological condition. Maura opens up about the terrifying diagnostic odyssey that began when her daughter Ellery was just two and a half years old, the heartbreak of watching her child’s sudden and unexplained deterioration, and the determination it took to fight for answers and access life-saving treatment. We explore the toll OMAS took on their family, the resilience it built, and how Maura eventually channeled that experience into a beautiful children’s book, Ellery the Brave Celery, written to help others better understand the OMAS journey in a way that is accessible to both kids and adults. This episode is a testament to the strength of rare disease caregivers and the power of storytelling in raising awareness. Whether you’re part of the rare disease community or simply want to hear an inspiring story of love, perseverance, and purpose—you’ll want to tune in. Subscribe for more stories that shed light on rare conditions and celebrate the strength of those affected. Ellery the Brave Celery on Amazon: https://bit.ly/41LQy8m #RareAwarenessRadio #OMASAwareness #RareDisease #MauraMcNamara #ElleryTheCelery #CaregiverJourney #Podcast #RareDiseasePodcast #SoundCloud #YouTube
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    1 h y 4 m
  • EP 12 Ming Lim

    EP 12 Ming Lim
    Mar 15 2025
    Unraveling OMAS: Advancing Research & Treatment with Dr. Ming Lim Episode Description: In this episode of Rare Awareness Radio, we sit down with Dr. Ming Lim, a leading expert in pediatric opsoclonus-myoclonus-ataxia syndrome (OMAS), a rare and complex neurological disorder that affects young children. Dr. Lim, a pediatric neurologist at Evelina London Children’s Hospital, shares his insights into the challenges of diagnosing OMAS, the role of neuroblastoma in disease progression, and the latest advancements in treatment strategies. We explore the importance of early intervention, the impact of immunotherapy, and how international collaboration is driving better outcomes for patients worldwide. From the groundbreaking International Consensus Report to the ongoing work in OMAS registries, Dr. Lim explains how researchers and clinicians are working together to improve care for children affected by this condition. He also highlights the critical role of advocacy and patient networks in ensuring better access to treatment and long-term support. Whether you're a parent, caregiver, researcher, or simply interested in rare diseases, this episode offers a deep dive into the evolving landscape of OMAS treatment and research. 🔗 Subscribe & listen now! #RareAwarenessRadio #OMAS #PediatricNeurology #RareDiseases #MedicalResearch #PatientAdvocacy #Neuroblastoma #OpsoclonusMyoclonusAtaxia #DrMingLim #RareDiseaseAwareness
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    32 m
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