In this episode, Effie talks with Brad Levy, founder of Epilepsy Awareness Day at Disneyland, about what families can expect at the expo, how to make the most of the event, and why connection matters when you’re navigating epilepsy.
The expo brings together families, clinicians, hospitals, researchers, and companies working in epilepsy. Across two days, attendees can hear expert presentations on epilepsy basics, EEGs, surgery, treatment options, clinical trials, and genetic epilepsies. Brad also shares how the event grew from a community day at Disneyland into a major gathering—and what he hopes families take away from it.
Brad’s daughter Sophie’s epilepsy journey and the origins of the event
What families can find at the expo, from expert talks to research and treatment resources
Where first-time attendees can start, including Epilepsy 101 and “Understanding Your EEG”
How to plan your schedule and bring questions or genetic test results
Yoga, meditation, service dogs, and therapy mini ponies
The value of meeting other families who understand the realities of epilepsy
Tuesday evening’s concert and dance party
Registration, Disneyland tickets, and accessibility planning
Epilepsy Awareness Day at Disneyland takes place November 16–18. The two-day expo is free with registration; Disneyland admission is separate. After registering for the expo, attendees can access a link for a discounted park ticket. The event also includes a concert and dance party on Tuesday evening, followed by a day at Disneyland on Wednesday.
For registration, the schedule, and event details, visit Epilepsy Awareness Day.
Epilepsy Awareness Day on Instagram
This episode is sponsored by Citizen Health and Ari, an AI teammate for rare disease families. Ari brings your medical records and updates together, then helps you prepare for appointments with a clear summary, questions to ask, and messages for your care team.
Learn more at citizenhealth.com.
Thanks for listening to Once Upon a Gene! If this episode lit a spark, share it with a fellow rare disease family and help us spread the word about Epilepsy Awareness Day at Disneyland.
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