Seany’s Shuffle 2025
November 16 @ 10:00 am - 1:00 pm
Proud Member of the CURE Epilepsy Run/Walk Series
Event Details
On Sunday, November 16, 2025, Sean’s family is excited to host a 2.6 Mile Fun Run AND a one mile walk through Lakewood Ranch, Florida to raise awareness and funds for epilepsy research! One in 26 people will develop epilepsy in their lifetime, and our 2.6-mile fun run route brings awareness to this fact. This is a family-friendly event, with music, snacks, and lots of smiles!
The event will begin at 10 am at the Sapphire Point Amenity Center, 5970 Bluestar Court, Lakewood Ranch, Florida. Additional details for the event will be emailed to participants prior to race day!
Thank you to our partners UCB, SK Life Science, and Neurelis.
The Inspiration, Seany Matt
Sean, nearly 7 years old, has epilepsy secondary to Menkes disease, and his family is raising money in his honor to help support epilepsy research.
Sean was diagnosed with infantile spasms at just 7 months old. After undergoing two rounds of intensive hormone and steroid treatments to control his seizures in the first 6 weeks after his diagnosis, we learned quickly that the underlying trigger for Sean’s epilepsy is a rare genetic disease called Menkes.
Sean underwent three years of copper therapy for his Menkes while continuing medications, regular blood draws, EEGs and several other prolonged hospital stays and visits to specialists to control his seizures. While there is no cure for Menkes, we know that controlling Sean’s seizures through medication and therapeutics is how he is still with us and continues to grow and thrive.
