More severe epilepsy and greater behavioral challenges predict worse health-related quality of life (HRQoL) up to 10 years later in people with Dravet syndrome, a study has found. In addition, early use of sodium channel blockers — a type of anti-seizure medication that should be avoided in most…
News
Children and adults with Dravet syndrome commonly exhibit challenging behaviors such as aggression, dangerous behavior, and impulsivity, according to a Dutch study based on responses from 20 parents. These behaviors, apart from the seizures that are a hallmark of the disease, can greatly affect the quality of life of…
A higher single dose of STK-001 will be administered in the U.S.-based Phase 1/2a MONARCH trial that is testing Stoke Therapeutics’ experimental therapy in children and adolescents with Dravet syndrome. The U.S. Food and Drug Administration (FDA) allowed Stoke to test a 70 mg dose in the MONARCH…
To help ensure that those with Dravet syndrome receive high-quality care regardless of their financial situation, the Dravet Syndrome Foundation (DSF) again is offering its global Patient Assistance Grant (PAG) Program. “Medical expenses are high when you have a loved one with Dravet syndrome, and we know…
The Dravet Syndrome Foundation (DSF) is funding a collaborative research project to provide a framework for artificial intelligence (AI)-based analyses of data in the published scientific literature related to Dravet syndrome. The grant provides $240,000 over the next two years to support the project. The work will be…
A Phase 1 clinical trial that enrolled healthy volunteers to test BMB-101, Bright Minds Biosciences’ investigational treatment for Dravet syndrome, has moved to its final part, the company announced in a corporate update. This first-in-human trial of the oral therapy, which is testing BMB-101 at different doses,…
Brain-like organoids, or “mini-brains,” that are specific to affected brain regions and derived from patients could act as models for studying the underlying molecular mechanisms of Dravet syndrome, a study shows. Researchers created patient-derived organoids of the forebrain, a region enriched with types of nerve cells called GABAergic neurons…
For this year’s International Epilepsy Day on Feb. 13, supporters joined together to eliminate myths and misconceptions about epilepsy. Organized by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), the event is held on the second Monday of each February in an…
Caregivers of children with Dravet syndrome report that their child’s use of Fintepla (fenfluramine) significantly reduces seizure burden and leads to a number of quality-of-life benefits for their children, themselves, and the rest of their family. That’s according to a recent study conducted in Europe, which involved interviews…
Fintepla (fenfluramine) is associated with dose-dependent, clinically meaningful improvements in everyday behavioral and emotional control, as well as the ability to adapt to new situations, in preschool-aged children with Dravet syndrome. These benefits weren’t always tied to a clinically meaningful reduction in the frequency of seizures, suggesting the…
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