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. 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! Bagels and coffee in the morning and a lunch is to be offered as well! All children with Dravet syndrome or epilepsy can register for free with a registered adult.
Dravet Syndrome Foundation is a non-profit organization dedicated to aggressively raising research funds for Dravet syndrome and related conditions. 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. So much progress has been made over the past 10-20 years, but there is more to do!
Dravet syndrome is a rare and catastrophic form of epilepsy beginning in childhood. Dravet Syndrome is associated with behavioral and developmental delays, sleeping difficulties, orthopedic conditions, sensory integration disorders, and more. People diagnosed with Dravet Syndrome also have a 15-20% chance of SUDEP (Sudden Unexpected Death in Epilepsy).
All registered participants will receive an event T-Shirt. All 5k participants will receive a participant medal.
**Participants must register before August 13 to guarantee their event T-shirt.
Event Date:
Saturday, September 27
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
Adult Walkers: $35
Kids (3-17): $20
*Individuals with Dravet Syndrome or Epilepsy can register for free with a paying adult
**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.
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. It is lifelong, progressive, and currently has no cure.
Since his diagnosis, Charlie has endured more than most adults - including frequent seizures, hospital stays, emergency medications, medical procedures, and constant therapies. He’s tried numerous medication combinations, sometimes taking up to five at once. Since he was 10 months old, Charlie has followed a strict medical ketogenic diet to help control his seizures. Despite these efforts, he continues to experience 6-10 tonic-clonic seizures each month and has already been rushed to the emergency room by ambulance five times this year. Despite it all, Charlie’s smile and spirit remain strong.
