Steps Toward a Cure: Michigan 5k, Kids Fun Run, and Walk

🏃‍♂️ Race Overview

Dravet Syndrome Foundation’s 3rd Annual Steps Toward a Cure: Michigan 5k run, fun run, and family walk!

• Invite: Your friends and family to join Steps Toward a Cure to help raise awareness and funds for our important research and patient advocacy programs.
• Activities: There will be a 5k, kids fun run, and a family walk to follow. Kid-friendly activities will be available at the picnic area along with a silent auction.
• Refreshments: Bagels and coffee in the morning and a lunch will also be offered!
• Registration: All children with Dravet syndrome or epilepsy can register for free with a registered adult.

🔬 About Dravet Syndrome

Dravet Syndrome Foundation is a non-profit organization dedicated to aggressively raising research funds for Dravet syndrome and related conditions.

• Support: Dravet Syndrome Foundation’s ability to fund research is due in large part to the generous support of individual donors and sponsors who believe in our mission.
• Progress: So much progress has been made over the past 10-20 years, but there is more to do!
• Impact: Dravet syndrome is a rare and catastrophic form of epilepsy beginning in childhood, associated with various complications.
• Risk: Individuals diagnosed with Dravet Syndrome have a 15-20% chance of SUDEP (Sudden Unexpected Death in Epilepsy).

👕 Participant Info

All registered participants will receive an event T-Shirt. All 5k participants will receive a participant medal.

• Reminder: Participants must register before August 13 to guarantee their event T-shirt.

📅 Event Details

• Date: Saturday, September 27
• Time: 8:00 AM - 1:00 PM
• Location: Kensington Metropark, North Martindale Picnic Shelter, 4570 Huron River Parkway, Milford, MI, 48380

⏰ Schedule

• 8:00 am: Check in & Onsite Registration (Race packet pickup will be onsite the morning of event)
• 9:00 am: 5K Starts
• 9:15 am: Kids Fun Run Starts
• 10:00 am: 1-Mile Family Walk Starts
• 10:30 - 1:00: Raffle, Refreshments & Games

📝 Registration

REGISTRATION IS NOW OPEN: Click HERE to register!

• Adult Walkers: $35
• Kids (3-17): $20
• Free Registration: Individuals with Dravet Syndrome or Epilepsy can register for free with a paying adult.
• Reminder: Participants must register before August 26 to guarantee their event T-shirt.

❤️ My Why

Charlie is our sweet, affectionate 4-year-old with an infectious laugh and a love for trains, monster trucks, and Hot Wheels. He’s also a proud big brother and the heart of our family in Highland Township, Michigan.

• Diagnosis: At just 6 months old, Charlie had his first prolonged tonic-clonic seizure. Genetic testing soon confirmed a devastating diagnosis: Dravet Syndrome, a rare and catastrophic form of epilepsy affecting 1 in 15,700 children.
• Challenges: Since his diagnosis, Charlie has endured more than most adults - including frequent seizures, hospital stays, emergency medications, medical procedures, and constant therapies.
• Diet: He’s followed a strict medical ketogenic diet to help control his seizures since he was 10 months old.
• Spirit: Despite these efforts, Charlie continues to experience 6-10 tonic-clonic seizures each month: however, his smile and spirit remain strong.