We began having these benefits four years ago to raise awareness in our community, and to do everything we can to contribute to research so that a cure can be found for our son. He is the most important thing in our lives, and we will do anything we can to help give him a better way of life. The entire community is involved in the event, whether it is through contributing auction items, food for the event, or coming out the day of to show their support. Each year we sell brisket and link plate lunches, have a live auction, live music and more. Everyone has a great time and can’t wait for [...]
Two young girls, Ella Juarez and Avery Cooper, who live on Scarlett’s street held a bake sale in her honor to raise funds for Dravet Syndrome Foundation. Their generosity and kind spirits help to raise $764! They are aiming to raise over $1,000 next year!
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 [...]
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.
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 [...]