Decoding Dravet
Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. This blog will keep you up to date on current research, treatment options, advocacy efforts, community activities, and other topics that are important to the Dravet syndrome community.
FINTEPLA® Receives FDA Approval for Treatment in Dravet Syndrome
On June 25th, 2020, the FDA announced approval of FINTEPLA® (fenfluramine) oral solution, CIV for the treatment of seizures associated with Dravet syndrome in patients 2 years of age and older. In two Phase 3 placebo-controlled clinical trials FINTEPLA [...]
Stoke Therapeutics Launches MONARCH Study
The most common cause of Dravet syndrome is a genetic mutation in the SCN1A gene that results in a reduction in a type of sodium channel (Nav1.1) in the brain. A new type of medicine, STK-001, designed by Stoke [...]
New Sibling & Parent Resources
One of the greatest concerns of parents and caregivers in our community is the impact on siblings who have a brother or sister with Dravet syndrome. Their needs are frequently neglected because so much of the parents’ emotional energy [...]
Welcome our New Research Coordinator
We are so excited to welcome Veronica Hood, PhD, to DSF as our new Research Coordinator. Veronica has an MS in Biology from East Tennessee State University and a PhD in Cell, Stem Cell, and Developmental Biology from the [...]
June is Dravet Syndrome Awareness Month
We are just a few days away from June 1st, which is the start of Dravet Syndrome Awareness Month. We also celebrate international Dravet Syndrome Awareness Day on June 23rd. This year, we hope you will join DSF in [...]
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 [...]