Dravet Syndrome Foundation: Steps Toward a Cure

Dravet Syndrome Foundation’s 2nd 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 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 and results will be tracked and posted following the event! 

**Participants must register before August 13 to guarantee their event T-shirt.

Event Date:

Saturday, September 14

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: Timed 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 IS NOW OPEN:  Click HERE to register!

Timed 5K: $35
Adult Walkers: $30
Kids (3-17): $20
*Individuals with Dravet Syndrome or Epilepsy can register for free with a paying adult

**Participants must register before August 13 to guarantee their event T-shirt.

  My Why:

My son, Charlie, is a very sweet and affectionate 3-year-old. Charlie is the best older brother to our other son, Jack. We all currently live in Highland Township, MI. Charlie has an infectious laugh, loves to play with his trains, monster trucks, and Hot Wheels cars. At 6 months of age, Charlie had his first tonic-clonic seizure and landed in the hospital for multiple nights. This was his first large seizure, but it was not his first seizure. Genetic testing was done which revealed he has a rare (1:15,700), intractable, progressive, severe form of epilepsy called Dravet Syndrome. There is no cure! Charlie will not outgrow these seizures. Shortly after his diagnosis, Charlie was airlifted to Mott Children’s Hospital due to a prolonged, uncontrollable febrile seizure. Since then, his seizure activity has been difficult to control. At his peak he was having 20-25 seizures per day. While most are brief, most require medication to stop and can result in extended hospitalizations. Currently, Charlie is averaging a tonic- clonic seizure once every 2 weeks, but recently has been as high as 7 tonic-clonic seizures in 1 month. He has delays in several areas, speech especially, that we are actively trying to correct. Charlie has been on many different medications, had countless blood draws, MRIs, EEGs, PT/OT visits, doctor visits, and is on a special, very restrictive, ketogenic diet. There has been so much progress made over the past 10 years to benefit those diagnosed with Dravet Syndrome. We are extremely motivated to find better treatments and, eventually, a cure for Dravet Syndrome! We can't do it without your help though! We would love to see you at this event!

Thank You!!