Stoke Therapeutics Launches MONARCH Study The MONARCH Study, conducted by Stoke Therapeutics, is currently enrolling for a Phase1/2a trial of STK-001. This new therapeutic medicine acts to specifically increase the number of healthy sodium channels (Nav1.1) that are impacted by mutations in SCN1A gene, the most common cause of Dravet syndrome. The study [...]
FINTEPLA® Receives FDS Approval for Treatment in Dravet Syndrome On June 25,2020, the FDA approved FINTEPLA® (fenfluramine) oral solution for the treatment of seizures in Dravet syndrome for patients 2 years and older. As part of the approval, the FDA required a black box warning on the medication. Additionally, the FDA requires the [...]
Meet our new Research Coordinator, Veronica Hood, PhD! Welcome to Our New Staff Member! 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 University [...]
New Sibling & Parent Resources Many members of our community including parents and siblings (ages 9 and up) participated in a research study called the Sibling Voices Survey. Findings from the study were presented at the 2018 DSF Conference in Aurora, CO. An infographic of the findings can be found here. And now, thanks to [...]
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 [...]
Meet Tina & Ryan! This #MemberMonday meet Ryan and his mom, Tina McDermott. Tina is an active member in the Dravet syndrome community. She serves as a DSF Family Ambassador in the midwest region and also as a DSF Social Ambassador. Her youngest son, Ryan, was diagnosed with Dravet syndrome in 2012 at [...]
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 and time is focused on the medical care of [...]
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 [...]
Welcome New Board Members Welcome to Our New Board Members! Please join us in welcoming our two newest board members, Ashley Kerns and Dr. Joseph Sullivan, who officially began their terms on April 1, 2020. Ashley resides in Westlake, Louisiana with her three children, Michael (age 9), Samuel (age 6), and Katie (age 1). Katie was [...]
Clinical Trial Update Soticlestat (TAK-938/OV935) Ovid Therapeutics recently presented updates on their clinical trials of soticlestat (TAK-935/OV935) at the American Academy of Neurology virtual meeting for their adult DEE cohorts. Soticlestat targets the cholesterol pathway by inhibiting the enzyme CH24H (cholesterol 24-hydroxylase), which produces 24HC (24-hydroxycholesterol). When there is too much 24HC in [...]
