Stepping Up for Dravet Syndrome Awareness - Darien, CT (September 21st)

Twins, Christopher & Ryan Thurlow will be seniors at Darien High School this upcoming school year and are organizing an awareness walk and fundraiser benefitting the Dravet syndrome Foundation in honor of fellow Darien HS classmates Jeremy and Miles Clark. The boys went to Royle School together and have been classmates and friends throughout the years.

Also twins, Jeremy and Miles Clark were both diagnosed with Dravet syndrome (DS) at 6 months of age. DS is a medication-resistant developmental and epileptic encephalopathy that begins in infancy and proceeds with accumulating symptom burden that significantly impacts individuals throughout their lifetime. Dravet syndrome is a rare disease, with seizures that typically begin during the first 2-15 months of life. Seizures are frequently prolonged, and are not well managed with current medications. Patients present with a variety of seizure types that generally evolve with age. Current treatment options are limited. Learn more about Dravet syndrome here!

Learn more about Jeremy and Miles and how Christopher and Ryan hosted a fundraiser to help the Clarks get their service dog (Valerie) here!

Now that the boys are back together again at Darien HS, Christopher and Ryan are hoping the community will come back together to help raise awareness and solicit crucial funds for the Dravet Syndrome Foundation in honor of their remarkable classmates, Jeremy and Miles Clark.

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