MONARCH Study Phase 1/2a

By |2020-07-15T13:08:01-05:00July 15th, 2020|Categories: Research / Treatments|

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 [...]


By |2020-07-15T13:04:24-05:00July 15th, 2020|Categories: Research / Treatments|

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 [...]

New Staff Member

By |2020-07-15T13:04:56-05:00July 15th, 2020|Categories: Our Community|

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 [...]

Parent & Sibling Resource Kits

By |2020-07-15T13:05:06-05:00July 15th, 2020|Categories: DSF Programs|

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 [...]

#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 [...]

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 [...]