Making a Difference for Dravet2016-12-15T17:59:02-05:00

Making a Difference for Dravet

By hosting a fundraising event to benefit DSF you can raise funds for research, while increasing awareness of Dravet syndrome and associated childhood epilepsies.

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In Honor of Ella – Wilton, CT

The Goddard School & its parent community organized a fundraiser in honor of Ella. Her sister, Clara, is in the Pre-K classroom and the school wanted to help raise awareness and funds for the Dravet Syndrome Foundation. Over a two week period, they sold butterflies of all colors, which were hung in their foyer as donations were made. Each colored butterfly represented a certain amount donated. To thank the generous families who contributed to the cause, they also had a meet and greet with refreshments on May 13th, so that families could meet Ella, Clara, and their family. We truly appreciate the support of the Goddard School and their families – thank you [...]

In Honor of Khloe – Purchase, NY

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 [...]

In Honor of Hayden

In honor of Hayden, his parents recently hosted a t-shirt fundraiser, with proceeds benefiting DSF. Thanks to an outpouring of support from family and friends, they raised almost $3,000! Thank you to Hayden, his parents and their amazing supporters!

NY5thgen – New York

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.

In Honor of Paige

Special thanks to Brian Frate for running a 2nd marathon to raise awareness of Dravet syndrome in honor of his daughter, Paige. His efforts over the last two years have raised over $2800 for DSF!!!