We Need You! Every day for more than 10 years, Dravet Syndrome Foundation (DSF) has been relentless in funding research, organizing our community, and helping to make advancements in the field of Dravet syndrome and other rare epilepsies. At the end of 2018, we saw two new FDA-approved medications come to market with an indication [...]
You face a lot of difficult days when you are living with Dravet syndrome. As our Family & Caregiver Engagement Director, Wendy Fry, often says, Living with Dravet, we have high highs and low lows. Our families live in a constant state of flux and never know what is going to be happening with their [...]
This week, I wanted to share an update on an exciting new project we are working on and to introduce you to the great partners we are working with to development this useful tool for our community. Earlier this year we were excited to receive an unrestricted grant from Greenwich Biosciences to start the DSF [...]
2019 Double Down for Dravet: Philadelphia Thank you Jamie & Jason Cohen, Wendy & Greg Fry, Bethany & Brad Goering, Sarah & Adam Jacobs, Dana & John Keating, Laura Kennedy & Danielle Paffett, Erika & Ryan Rettew, and Alexis & Peter Shapiro. These 8 Philadelphia area families joined forces to host an amazing [...]
TakeOnEpilepsy.com Website Re-Launch Families who take on rare and severe forms of epilepsy deserve more. That’s why we’re excited to let you know Greenwich Biosciences has enhanced its site, TakeOnEpilepsy.com, with more resources and more uplifting stories than ever to serve the needs of our resilient community. A new, easy-to-navigate design makes it [...]
Dash for Dravet on Turkey Day: Virtual Event Before the feast, get your family and friends together for our 4th 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 [...]
Birthday Buddies Club Join the DSF Birthday Buddies Club and your child will receive a birthday card and small gift from DSF's mascot, Aurora! Patients of any age may participate, however, at this time, the DSF Birthday Buddies club is only available for Dravet syndrome patients in the United States and the parent [...]
Peer Support Best Practices Workshop DSF is excited to partner with The Child Neurology Foundation on their upcoming Peer Support workshop! CNF, along with their co-host, the American Epilepsy Society, is inviting non-profit staff in the child neurology space who are interested in the peer support model. The workshop will be held December [...]
Dravet syndrome can be conceptualized as a three-stage disease - the first stage (febrile; up to age 1) is typically characterized by prolonged complex febrile seizures and status epilepticus; followed by a second stage (worsening; up to age 5) which is characterized by the appearance of additional seizure types (e.g. generalized motor, atypical, myoclonic, [...]
This article is a summary of the efficacy and safety of stiripentol (Diacomit), a drug indicated for use in patients with Dravet syndrome as an adjunctive therapy in conjunction with clobazam (Onfi) and valproate (Depakote). Stiripentol was first reported to be helpful in Dravet syndrome in 2000, and was approved in the EU in [...]
