Today's conversation centers on when cutting-edge neuromodulation meets compassionate, team-based pediatric care. In this episode, the Seizure Diaries hosts welcome Dr. Scott Perry, Director of the Jane and John Justin Institute for Mind Health at Cook Children's Hospital, for a deep dive into the evolving world of epilepsy surgery, neuromodulation, and patient-centered decision-making.

Learn how Dr. Perry and his team are helping families navigate complex diagnoses, evaluate treatment options, and harness technology to improve outcomes.

Dr. Perry shares his professional journey from aspiring astronaut to leading pediatric neurologist, offering insight into the multidisciplinary approach that powers Cook Children's Neuroscience Center. He discusses how collaboration across neurology, psychology, psychiatry, developmental pediatrics, and rehabilitation supports holistic care, and why big data and collaborative research networks like the Pediatric Epilepsy Research Consortium are shaping the future of epilepsy treatment.

Through stories and statistics, Dr. Perry explains how earlier surgical referrals, detailed evaluations, and the rise of stereo EEG (SEEG) are changing what's possible for children with intractable epilepsy.

Listeners will hear:

• How neuromodulation, epilepsy surgery, and genetic insights intersect in pediatric care

• The critical role of parents and caregivers in informed decision-making

• The value of individualized treatment

• Ongoing efforts to shorten the path from diagnosis to intervention

More about Cadence Neuroscience:

Cadence Neuroscience is currently developing an investigational BTS [Biomarker Targeted Stimulation] device therapy for the treatment of drug-resistant focal epilepsy, based on pioneering work performed by researchers at Mayo Clinic. Learn more at cadenceneuro.com.

Resources & Links Mentioned in This Episode

• cookchildrens.org/services/neurosciences

• perc-epilepsy.org

• childneurologyfoundation.org

Epilepsy affects millions of people worldwide, yet access to accurate information, supportive care, and innovative therapies can be hard to find.

In this episode of Seizure Diaries, hosts Kent Leyde and Doug Sheffield of Cadence Neuroscience sit down with leaders from the Epilepsy Foundation to discuss how lived experience, groundbreaking research, and patient-driven data are shaping the future of epilepsy care.

Bernice "Bee" Martin Lee, Epilepsy Foundation CEO, shares her personal journey with epilepsy and her vision for ensuring no one faces epilepsy alone. Chief Research and Innovation Officer Caitlin Grzeskowiak, PhD also joins to explain how data collection, research collaboration, and innovative platforms like Empowered are creating real-world impact for patients, caregivers, and clinicians alike.

Together, they reveal how advocacy, science, and technology intersect to improve quality of life and accelerate progress. This discussion combines personal stories with cutting-edge initiatives and sheds light on how collective effort is driving change in the epilepsy space.

Listeners will hear:

• Bernice's personal journey with epilepsy and how it shapes her leadership

• How the Epilepsy Foundation is tackling health equity and stigma

• Caitlin's path from genetics research to data-driven advocacy

• The launch of Empowered, a patient-centered data platform

• How technology, shared databases, and chatbots are improving access to information

• Upcoming opportunities like the Epilepsy Shark Tank and startup accelerator

More about Cadence Neuroscience:

Cadence Neuroscience is currently developing an investigational BTS [Biomarker Targeted Stimulation] device therapy for the treatment of drug-resistant focal epilepsy, based on pioneering work performed by researchers at Mayo Clinic. Learn more at cadenceneuro.com.

Resources & Links Mentioned in This Episode

• Epilepsy Foundation – Main website for education, advocacy, and community resources: epilepsy.com

• Empower(ed) Platform – Learn more under About Us, Research & Funding on epilepsy.com

• Shark Tank Innovation Program – Pitch competition for epilepsy-focused innovations: epilepsy.com/sharktank

• My Seizure Diary – Digital tool for tracking seizures and treatments: epilepsy.com/learn/seizure-diary

• Chatbot "Sage" – AI assistant for trusted epilepsy information (available on the epilepsy.com homepage).

• AWS Health Data Lake – Partner powering the Epilepsy Foundation's Empower platform.

• Across Matrix / Greenlight – Technology partners enabling EHR integration for Empowered.

• Aurelius – Licensing partner connecting de-identified patient data with pharma/biotech.

Support & Helplines

• Epilepsy Foundation Helpline: 1-800-332-1000 (24/7 support)

• Live Chat Helpline: Accessible through epilepsy.com

What does it take to prevent a tragedy that many don't even know could happen? How do we empower families and caregivers to better support those living with epilepsy? And why is awareness around SUDEP—Sudden Unexpected Death in Epilepsy—so urgently needed?

This episode of Seizure Diaries tackles these essential questions and more in a powerful and informative conversation. Hosts Kent Leyde and Doug Sheffield of Cadence Neuroscience welcome their very first guest, Tom Stanton, President of The Danny Did Foundation.

Tom shares the heartbreaking story of his nephew Danny's passing from SUDEP—a turning point that led to the foundation's mission to increase awareness, support families, and advocate for real change in epilepsy care.

Listeners will hear:

• Danny's story, told by his uncle, Tom
• challenges and improvements in SUDEP awareness
• technological advances in seizure detection
• support systems for the caregiver burden
• ways to get involved and support the cause
• the importance of patient awareness
• how the Foundation is addressing critical gaps in education and communication around epilepsy, while championing both innovation and compassion

This episode sheds light on how knowledge and collaboration can save lives. Tom discusses the importance of empowering families with resources, building stronger bridges between clinicians and advocates, and ensuring that no family facing epilepsy has to navigate it alone.

More about Cadence Neuroscience:

Cadence Neuroscience is currently developing an investigational BTS [Biomarker Targeted Stimulation] device therapy for the treatment of drug-resistant focal epilepsy, based on pioneering work performed by researchers at Mayo Clinic. Learn more at cadenceneuro.com.

The Danny Did Foundation:

Learn more about The Danny Did Foundation and how to support the organization at their website: https://www.dannydid.org/about-danny-did/.

Mentioned in this episode:

AES - American Epilepsy Society

AAN - American Academy of Neurology

Dravet syndrome - Dravet Syndrome Foundation