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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🩵 Thank you for listening to The LCC Circle Podcast!
Your support helps us continue sharing the stories, science, and strength of our global LCC community.

🎧 If you found this episode meaningful, please consider becoming a monthly supporter:
👉 https://www.buzzsprout.com/2545566/support

📲 Don’t forget to follow, rate, and share the podcast — it helps others discover our community and learn about LCC/Labrune Syndrome.

Thank you for being part of The LCC Circle. Together, we are raising awareness, building connection, and fueling hope. 💙💗💜

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 Foundation, and the ways they continue to advocate for their child and others impacted by LCC.

This episode is about more than a diagnosis. It’s about resilience. It’s about family. It’s about redefining what strength looks like. And it’s about the power of community when the road feels isolating.

Whether you are a parent, caregiver, clinician, researcher, or supporter, this conversation will remind you that even in the rarest of circumstances, connection changes everything.

💜 Because no family should walk this road alone.

Support the show

🩵 Thank you for listening to The LCC Circle Podcast!
Your support helps us continue sharing the stories, science, and strength of our global LCC community.

🎧 If you found this episode meaningful, please consider becoming a monthly supporter:
👉 https://www.buzzsprout.com/2545566/support

📲 Don’t forget to follow, rate, and share the podcast — it helps others discover our community and learn about LCC/Labrune Syndrome.

Thank you for being part of The LCC Circle. Together, we are raising awareness, building connection, and fueling hope. 💙💗💜

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.

Support the show

🩵 Thank you for listening to The LCC Circle Podcast!
Your support helps us continue sharing the stories, science, and strength of our global LCC community.

🎧 If you found this episode meaningful, please consider becoming a monthly supporter:
👉 https://www.buzzsprout.com/2545566/support

📲 Don’t forget to follow, rate, and share the podcast — it helps others discover our community and learn about LCC/Labrune Syndrome.

Thank you for being part of The LCC Circle. Together, we are raising awareness, building connection, and fueling hope. 💙💗💜