Research News
Surgery & Procedures in Dravet Syndrome Patients with Dravet syndrome often require a surgery or other invasive procedure at some point in their life. While there are no specific surgical procedures that are specifically required due to the diagnosis of Dravet syndrome, there are some procedures that occur more commonly, including: feeding tube placement (i.e., […]
Surgery & Procedures Read More »
Dravet Syndrome and COVID-19 Vaccination As the COVID-19 pandemic continues, vaccination has become a major tool in combating the spread and mitigating the symptomatic infections caused by the novel coronavirus. Vaccination can be a topic of particular concern for individuals with Dravet syndrome (DS) and their families given that vaccines are a common seizure trigger
COVID-19 Vaccine Survey Results Read More »
Momentum 1 Phase 3 Clinical Trial New Clinical Study Offers Change to Further Research in Dravet Syndrome If your child or a loved one has Dravet syndrome, you know that it affects the whole family. Dravet syndrome, a lifelong disease marked by prolonged, frequent seizures, requires constant care and can significantly impact quality of life
New Clinical Study – Momentum 1 Read More »
Banerji et al (2021) recently published a manuscript in Brain Communications describing their investigation of metabolic pathways in a zebrafish model of Dravet syndrome. Previous studies had described metabolic deficits in Dravet syndrome generally related to decreased energetic output. The ketogenic diet remains one of the more successful therapies for seizure reduction in Dravet syndrome,
New Study Opportunity for Adults with Dravet Syndrome Dr. Danielle Andrade, an adult neurologist who is an expert in Dravet syndrome (DS), is currently conducting a study of adults with DS to improve the understanding of seizures, symptoms, comorbidities, and daily life as patients age. Part of the study is examining patients that visit Dr.
New Study for Adults Read More »
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 Research Priorities with
Curing the Epilepsies Read More »
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 has a
The COVID-19 pandemic has raised health concerns worldwide, but particularly in communities that may be at higher risk from illness and infection. To understand this better in the Dravet syndrome community, Dravet Syndrome UK (DSUK) performed a survey of families caring for an individual living with Dravet syndrome from June-July 2020 to assess the impacts
The impact of COVID-19 in Dravet Syndrome: a UK survey Read More »
Just last month, a previous research review detailed how Stoke Therapeutics developed their targeted augmentation of nuclear gene output (TANGO), utilizing anti-sense oligonucleotides (ASOs) to upregulate expression of several genes, including SCN1A, in human cells and mouse brain. ASOs are single-stranded RNAs that bind to target RNA sequences and have the potential to alter the
In this brief report published in June, Vezyroglou et al detail the results of epilepsy surgery for focal seizures in 8 patients carrying mutations in the SCN1A gene that were predicted to be causal. Three of the 8 patients had a clinical diagnosis of Dravet syndrome. The surgical procedures were successful in reducing or eliminating
