Curing the Epilepsies

By |2021-01-20T09:38:20-05:00January 20th, 2021|Categories: Research / Treatments|

Curing the Epilepsies 2021: Setting Research Priorities On January 5-7, 2021, the NIH/NINDS (National Institute of Health/ National Institute of Neurological Disorders and Stroke) held the “Curing the Epilepsies 2021: Setting Research Priorities” conference in a virtual format. The goal of the conference was to guide updates to the current Epilepsy Research Benchmarks and Transformative [...]

2020 Grant Awards

By |2020-12-15T11:35:47-05:00December 15th, 2020|Categories: Research / Treatments|

2020 DSF Grant Awardees DSF is dedicated to funding the highest caliber research on Dravet syndrome and associated epilepsies. Our focus is on research projects that will find new treatments and improve the quality of life for those living with an ion channel epilepsy. We place a high priority on funding research that [...]

AES Meeting Summary

By |2020-12-15T11:55:33-05:00December 15th, 2020|Categories: Research / Treatments|

AES 2020 Meeting Summary On December 4-8th, 2020, the American Epilepsy Society (AES) held its annual conference to bring together clinicians and scientists on the cutting edge of epilepsy research. This year had a multitude of presentations related to Dravet syndrome, making for an exciting few days focused on what we have learned [...]

Interactive Education

By |2020-11-16T13:59:28-05:00November 16th, 2020|Categories: Research / Treatments|

Dravet Syndrome and Caregiving: Your Voices Heard and Answered Mark your calendar for Monday, November 23 at 12:00 PM EST! Dravet Syndrome and Caregiving: Your Voices Heard and Answered We are excited to announce a new live, interactive, virtual education program created for caregivers of children or adults with Dravet Syndrome. This program [...]

2020 PAME Meeting

By |2020-11-11T14:37:37-05:00November 16th, 2020|Categories: Research / Treatments|

Partners Against Mortality in Epilepsy Meeting 2020 PAME – Even a Pandemic Can’t Stop the Quest Monday, December 7, 2020 2:30 pm – 4:30 pm Eastern Partners Against Mortality in Epilepsy (PAME) is a collaboration among health care providers, clinical researchers, basic scientists, public health officials, patient advocates, caregivers, bereaved families, and people [...]

EPX-100 Phase II Enrollment

By |2020-09-15T10:40:46-05:00September 15th, 2020|Categories: Research / Treatments|

EPX-100 Phase II Clinical Trial Enrollment Epygenix Therapeutics invites children with Dravet syndrome to participate in a Phase II Clinical Trial In a Phase II, multicenter, randomized, double-blind, placebo-controlled study Epygenix will test the investigational drug, EPX-100 (Clemizole Hydrochloride, oral solution), as an adjunctive therapy for children with Dravet syndrome (2-17 years old) [...]

MONARCH Study Update

By |2020-08-17T14:48:44-05:00August 18th, 2020|Categories: Research / Treatments|

First patient dosed with STK-001 in Part A of Phase 1/2a MONARCH clinical trial Stoke Therapeutics recently began the Monarch clinical trial and just announced that they have successfully administered STK-001 to the first patient in their trial. STK-001 is a novel disease-modifying therapy that utilizes RNA antisense oligonucleotides (ASOs) to restore levels [...]

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 [...]

FINTEPLA FDA Approved

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 [...]

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 [...]

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