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.
What is Special about a Specialty Pharmacy? A Tour of AnovoRX
While many of the families in the Dravet syndrome community obtain one or more of their child’s medications (such as Diacomit or Epidiolex) by mail from a specialty pharmacy, other families are not familiar with specialty pharmacies and the [...]
Guest Blog Post: Parting with Predictibility
Today's Guest Blog Post comes from Joy Segovia. Joy is a freelance science and copy writer based in Oregon. She studied neuroscience and anthropology at Bowdoin College and spent over ten years working in behavioral health and educational settings [...]
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 [...]