Episode 3 | No One Faces Epilepsy Alone: Support, Research, and Patient Stories

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