The LCC Circle
We share stories, successes, and scientific insights from the world of ultra-rare diseases. Through heartfelt conversations and expert insights, we bring together families, researchers, and advocates to illuminate the path toward understanding and treating LCC/Labrune Syndrome.
Brown Family -- AJ's Journey with LCC
In this episode of the LCC Circle Podcast, host Holly Tinker sits down with Danielle Brown from Rhode Island, whose four-year-old son AJ was diagnosed with Labrune Syndrome (LCC) in May 2025 after a two-year journey. Danielle opens up about AJ's earliest seizures, the long road to diagnosis, and how her family has navigated life with a rare genetic condition. From finding strength in the LCC Foundation community and the brotherhood of the fire service, to making every doctor visit a family adventure — Danielle's story is one of resilience, love, and never giving up.
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Tinker/Stewart Family Spotlight Episode
In this deeply moving episode of The LCC Circle: Stories, Support, and Science, we sit down with the Tinker/Stewart family to share their journey with LCC/Labrune Syndrome — a path they never anticipated, yet now walk with extraordinary courage and connection.
From the first signs that something wasn’t quite right, to navigating the long road toward diagnosis, this conversation opens an honest window into the emotional, medical, and practical realities of living with a rare disease. The Tinker/Stewarts share what it felt like to search for answers, how they found community within The LCC Foun...
What is LCC?
In Episode 1, host Holly Tinker is joined by Dr. Jamie Fraser and Ashley Dike to explore the basics of Leukoencephalopathy with Brain Calcifications and Cysts (LCC), also known as Labrune Syndrome. Together, they share what this ultra-rare disease is, how it impacts families, and why the connection between patients, caregivers, and researchers is vital to finding answers.
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