Marisa Wexler, MS, senior science writer —

June is Dravet Syndrome Awareness Month, and the community is coming together to share stories, build support, and increase knowledge about this rare form of childhood epilepsy. The Dravet Syndrome Foundation (DSF) is heading up several initiatives over the course of the month, with this year’s theme being…

Most caregivers of people with Dravet syndrome report poor sleep quality, according to a study in Germany. Reduced sleep quality was linked to higher levels of anxiety, depression, and burden, and more health conditions in patients, including moderate sleep disturbances. The impact on sleep for caregivers was substantial even…

Long-term treatment with soticlestat was found to reduce seizure frequency by more than 50% in most Dravet syndrome patients, according to about two years of data from the ongoing ENDYMION 1 clinical trial. “Soticlestat was associated with sustained seizure reductions over the interim period presented here,” researchers wrote.

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 novel gene therapy that works to increase the levels of an enzyme called p38-gamma extended survival and reduced seizure activity in a mouse model of Dravet syndrome, a new study reports. “We have tested this therapy extensively, and rigorous assessment by independent labs has confirmed our results,” said…

The Dravet Syndrome Foundation (DSF) has announced the award of $690,000 in total research funding for five projects that aim to improve care for people with Dravet syndrome. The one- to two-year research grants will provide each project funding in amounts ranging from $75,000 to $165,000. Two of…

Not only do young people with Dravet syndrome show cognitive, developmental and behavioral differences compared with their normally developing peers, but these differences tend to become more pronounced in adolescence, according to a new study. “Our data indicate that the gap in adaptive function and overall intellectual development between…

The U.S. Food and Drug Administration has expanded its approval of the anticonvulsant Diacomit (stiripentol) — when used as an adjunctive, or add-on therapy to Onfi (clobazam) — to help manage seizures in children with Dravet syndrome as young as 6 months of age. The infants must weigh…

There are close statistical associations between seizure frequency and the severity of other disease symptoms, such as language problems, in people with Dravet syndrome, a new study reports. “The significant relationships found between seizure measures and composite scores suggest that extended periods of seizure remission (whether expressed in terms of…

Japan’s Ministry of Health, Labour and Welfare has approved oral Fintepla (fenfluramine) as an add-on treatment for seizures associated with Dravet syndrome in adults and children 2 and older. The therapy is specifically indicated for patients whose seizures are not adequately controlled by other anti-seizure medications. The approval…