WI 38 - Inside Batten's DiseaseWI 38 - Inside Batten's Disease
Weekly Infusion
Dr. Jill Weimer discusses her work on the extremely rare Batten's Disease, a neurodegenerative disease that affects children. Chris Velona joins to discuss his son Sebastian's experience with the illness and his goal to eventually find a...
47:54•26 Jul 2017
Batten's Disease: A Journey of Hope and Resilience
“We want all of these things to happen simultaneously. And so what we've been working on now, what the nationwide team's been working on now, is sort of what the next step is beyond those six patients, whether we go back to the Fda and look at possibly expanding the number of patients that we're doing in that phase one safety trial or kind of taking this to the next step.”
Imagine facing a rare disease that affects your child, with no known cure in sight. This episode of 'Weekly Infusion' brings you into the world of Batten's Disease, a neurodegenerative disorder that impacts children. Hosts Dr. Drew Pinsky and Dr. Bruce Heischober are joined by Dr. Jill Weimer, a dedicated researcher working on groundbreaking gene therapy, and Chris Velona, a father sharing his family's personal battle with the disease. Dr.
Weimer breaks down the science behind Batten's Disease, explaining its symptoms, diagnosis, and the current state of research. Her work on gene therapy shines a light on potential future treatments, offering a beacon of hope for affected families. Chris Velona's heartfelt story about his son Sebastian adds a deeply personal touch, illustrating the emotional and physical toll of the disease.
The conversation also touches on the role of lysosomes in neurodegenerative diseases, the critical importance of sleep for brain health, and actionable ways listeners can support ongoing research efforts. This episode isn't just informative; it's a testament to human resilience and the relentless pursuit of a cure. If you're looking for an episode that combines scientific insight with real-life stories, this one is a must-listen.
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