2020 Annual Campaign We hope you will join us as a supporter at DSF’s Annual Campaign and help us achieve our fundraising goal of $100,000. There are 2 easy ways you can give today: Online at www.dsfannualcampaign.org By mail, to DSF, PO Box 3026, Cherry Hill, NJ 08034 Please know that our community [...]
Dash for Dravet: Virtual Event Thanksgiving Day is just 10 days away! Here is your chance to get your family and friends together for our 5th annual Dash for Dravet on Turkey Day, and help raise funds to further research in Dravet syndrome and support the important programs of DSF! We are [...]
SUDEP Action Day is October 23rd SUDEP ACTION Day is October 23rd! One of the top concerns for caregivers in the Dravet syndrome (DS) patient community is Sudden Unexpected Death in Epilepsy (SUDEP). Of the almost 20% mortality rate within the DS population, roughly half of those deaths are attributed to SUDEP. This [...]
Dash for Dravet: Virtual Event Here is your chance to get your family and friends together for our 5th annual Dash for Dravet on Turkey Day, and help raise funds to further research in Dravet syndrome and support the important programs of DSF! This virtual 5K can be accomplished anywhere in the United [...]
Introducing unspoken symphony A new way to make music inspired by a child living with a rare and severe form of epilepsy We are thrilled to announce our partnership with Greenwich Biosciences to bring you unspoken symphony, an innovation that turns artwork into melodies—and it was all inspired by a child named Riley. Riley [...]
ENVISION Observational Study The ENVISION Study is an observational study of children aged 6 to 60 months with SCN1A-positive Dravet syndrome. Conducted by Encoded Therapeutics, ENVISION is designed to better understand the seizure, neurodevelopmental, motor and behavioral characteristics of Dravet Syndrome over a period of 2 years using standardized assessments. The ENVISION study [...]
Dash for Dravet: Virtual Event Before the feast, get your family and friends together for our 5th Annual Dash for Dravet on Turkey Day! This is a virtual 5K so it can be accomplished anywhere in the United States Run, walk, jog, roll or treadmill at your pace. Burn off calories before [...]
Steps Toward a Cure is going virtual! Mark your calendars and join DSF for our virtual Steps Towards a Cure event! Since we are unable to do in-person events at this time, in place of our annual walk and race events we have put together a virtual 1 mile walk, family stroll, or [...]
Last Call to Party in Your PJs for Dravet! It's not too late! Register by July 18th to receive your party pack in time! Mark your calendars and join DSF on July 25th to Party in your PJs for Dravet! Since we are unable to do in-person events at this time, in place of our [...]
Party in Your PJs for Dravet! Mark your calendars and join DSF on July 25th to Party in your PJs for Dravet! Since we are unable to do in-person events at this time, in place of our annual fundraising gala we are hosting a virtual interactive pajama party and YOU are on our guest list! Join us [...]
