Purple Day Expo at Disney

A huge thanks to Souha Mahmoudi for representing STXBP1-related disorders at the Purple Day Expo - a day filled with fun, inspiration, and support for the epilepsy community at Disney World last month.

Here’s Souha’s event recap for us:
The STXBP1 Foundation proudly participated in the Purple Day Expo 2025! Organized by the Anita Kaufmann Foundation in collaboration with The Epilepsy Association of Central Florida, the event was held at Disney's Coronado Springs Resort. It featured a variety of activities, inspiring speakers, and special sessions designed to support and engage those affected by epilepsy.

This year's star speaker was Mike Simmel, also known as Mighty Mike, a renowned basketball player who has not let epilepsy stop him from achieving his dreams. Mike was honored as one of the Ten Outstanding Young Americans for his initiative to fight the stigma around epilepsy. His speech was a great inspiration to everyone attending the event.

The expo also highlighted rare epilepsies, with multiple parents’ foundations present at the event, such as the LGS Foundation, the USP7 Foundation, CHD2, and of course, our own STXBP1 Foundation.

The event was a fantastic opportunity to learn about local services and support available to Florida residents, thanks to exhibitors such as Epilepsy Alliance Florida and Cure Epilepsy.

This year, the presence of pharmaceutical companies, healthcare clinics, and hospitals was particularly notable. Institutions such as AdventHealth, Orlando Health, and the Orlando Epilepsy Center played a major role in providing medical care for epilepsy in Orlando. Gaining the attention of such institutions is a crucial step for small communities like ours to increase general awareness about rare diseases.

Souha Mahmoudi