Khloe was diagnosed with complex partial seizure disorder when she was 16 months old. Although her doctors believe she had seizures as early as six months, given her EEGs. A year ago her diagnosis changed when her Neurology team found a rare genetic mutation that linked her seizures to Dravet syndrome. Dravet syndrome is a rare and catastrophic form of epilepsy for which there is currently no cure. All seizures are resistant to medical therapy and the prognosis for Dravet is poor. Research has recently discovered that Dravet is a spectrum disorder. Khloe’s family battles everyday to try to continue to keep her on the functioning end of the spectrum. Khloe’s average seizure numbers are [...]
Suttondale Subdivision in Frankfort, IL organized the Annual Subdivision Charity Softball Challenge. Trey Gryga is an 11 year old boy who lives in the Suttondale Subdivision and unfortunately was diagnosed with Dravet when he was 3 months old. We decided to make the Dravet Syndrome Foundation the beneficiary for our charity event. With lots of help from local businesses, neighbors, family and friends we were able to organize an event that raised over $5400.00
Thrivent Financial’s Employee Volunteer Team held a Misfit Gift sale on January 19, 2015. They sold new, unwanted gifts items from the holidays, donated by their corporate employees. Sales proceeds and cash contributions totaled $226.33 from the sale, and were matched by Thrivent Financial, with a check for $452.66 being sent to the Dravet Syndrome Foundation in memory of Ruby Hanson. Thank you to everyone at Thrivent for supporting our community and keeping Ruby’s memory alive.
Great friends of Logan's family, the Seabolt's hosted a lemonade stand called "Lemonade for Logan". In just a few hours of hard work selling cookies and lemonade, these 4 amazing kids raised $630 for the Dravet Syndrome Foundation to help find a cure for Logan and other kids battling Dravet syndrome and Epilepsy. A big thank you to all of the policy, firefighters and honor guard that all came out to support this great cause!
NY5thgen is a car club, made up of mainly camaro owners in the NY area. Every summer for the past 6 years we’ve held a BBQ/Fundraiser for our members. We auction off various items, all proceeds go to the DSF.