Research News
Long-term outcomes for patients with Dravet syndrome can vary quite a bit. Some patients may have more significant impacts on cognition or speech, while others may struggle most with behavioral or sleep challenges. There can also be differences in the age of onset, the types of seizures that are present, the severity of seizures, and […]
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The 2024 DSF Family & Professional Conference took place June 20th to 22nd at the JW Marriott Minneapolis Mall of America in Minnesota. The meeting brought together the community of patient-families, clinicians, researchers, and industry professionals to connect, learn from one-another, reflect on progress, and discuss the outstanding needs for individuals living with Dravet syndrome
2024 DSF Conference Recap Read More »
At the end of 2023, DSF announced our largest-ever grant award in the amount of $1 million directed to Ingo Helbig, MD and Ethan Goldberg, MD, PhD at The Children’s Hospital of Philadlephia (CHOP) to lead a large study aiming to collect samples from 500 patients with SCN1A-related epilepsy for whole genome sequencing. This genetic
DSF-Funded Clinico-Genomics Research Study Now Recruiting for Remote Participants Read More »
Artificial intelligence (AI) is the use of computer systems to perform complex tasks that would typically require a human to perform, such as visual perception, speech recognition, decision-making, translations, or even coming up with a title for this blog! The focus on AI continues to increase as the concept jumps out of the realm of
AI-Powered Progress: Transforming Epilepsy Care and Research with Technology Read More »
There have been some exciting data releases from Stoke Therapeutics regarding their Phase 1/2a trial for the investigational therapy, STK-001, that suggest this could be the first truly disease-modifying therapy for Dravet syndrome. Results indicate significant reductions in seizure frequency and notable improvements in measures related to behavior and cognition. In addition to a recent
Updates on STK-001: A Possible Disease-Modifying Therapy for Dravet Syndrome Read More »
Given the limited effectiveness of current therapies to treat Dravet syndrome and the significant burden of symptoms, much hope lies in the potential of targeted genetic therapies to treat Dravet syndrome at the root cause and modify the course of the disease. In the majority of cases, patients with Dravet syndrome carry mutations in the
New Genetic Therapy for Dravet Syndrome Advances Towards Clinical Trials Read More »
The pipeline for new therapies to address Dravet syndrome in 2024 is encouraging. There are several ongoing clinical trials for potential new treatments and even more in development. In today’s blog I will highlight a compound that is being investigated in a variety of human diseases and some recent work demonstrating there may be potential
Investigating PBA as a Treatment for Epilepsy Read More »
DSF held the 14th annual Research Roundtable on the evening of Thursday, November 30, 2023. The initial DSF Research Roundtable was held in 2010, and was truly a small gathering of founding families with a handful of researchers and clinicians familiar with Dravet syndrome. They sought to understand the current state of research and to
14th Annual DSF Research Roundtable Read More »
Brian Theyel, MD, PhD – Brown UniversityAbnormal ectopic action potentials in PV-INs: A novel pathophysiological mechanism in Dravet syndromeResearch Grant – $250,000, 2 years Grant Summary: Dravet syndrome, which is caused by a mutation in the SCN1A gene, is a debilitating illness that emerges during the first year of life. It causes seizures, setbacks during development, speech and language
Mary Connolly, MB, BCh, FRCPC(C), FRCP(I), FRCP(Edin) – The University of British ColumbiaShubhayan Sanatani, MD, FRCPC – The Universty of British ColumbiaExtended monitoring for cardiac arrhythmias in Dravet syndromeClinical Research Grant – $250,000, 2 years Grant Summary: Dravet syndrome (DS) is a rare serious condition associated with early onset of seizures that typically do not
Extended monitoring for cardiac arrhythmias in Dravet syndrome Read More »
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