EP 13 Maura McNamara

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