Upcoming EL-PFDD Meeting February 3rd!


Upcoming EL-PFDD Meeting February 3rd!

FINTEPLA® Receives FDA Approval for Treatment in Dravet Syndrome

By |2020-06-26T07:46:18-05:00June 25th, 2020|Categories: Decoding Dravet Blog|

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 demonstrated significant reductions in convulsive seizure frequency in patients whose seizures were not adequately controlled on [...]

Stoke Therapeutics Launches MONARCH Study

By |2020-06-18T11:02:46-05:00June 18th, 2020|Categories: Decoding Dravet Blog|

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 Therapeutics increases healthy copies of the Nav1.1 sodium channel in pre-clinical animal and cell models. Stoke [...]

New Board Members

By |2020-06-15T14:44:32-05:00June 16th, 2020|Categories: Our Community|

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 [...]

Soticlestat Trial Update

By |2020-06-15T14:39:57-05:00June 16th, 2020|Categories: Research / Treatments|

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 [...]

#MemberMonday Spotlight

By |2020-06-15T13:44:05-05:00June 16th, 2020|Categories: Our Community|

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 [...]

Welcome our New Research Coordinator

By |2020-06-02T07:21:08-05:00June 5th, 2020|Categories: Decoding Dravet Blog|

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 of Colorado. She spent 10 years in laboratory settings researching how small changes in genetic [...]


Go to Top