Research advancements have led to improvements in clinical care and the development of novel treatments for Dravet syndrome (DS). Despite being rare, DS is one of the most well-studied genetic epilepsies. DSF and the Dravet community have played a large part in these advancements. DSF’s ability to fund over $9 million in research has only […]
Opportunities to Participate and Advance Research for Dravet Syndrome Read More »
Dravet syndrome is a severe form of epilepsy that is primarily caused by mutations in the SCN1A gene, which encodes a sodium channel critical for the proper functioning of the brain. As a result, patients experience a multitude of challenges, including severe seizures, an increased risk of mortality, and developmental impacts on cognition, movement, and
Reflecting on Advancements in Gene Therapy for Dravet Syndrome Read More »
Eisai recently communicated their decision to discontinue human trials and manufacturing of the experimental therapy, lorcaserin. The current Phase 3 trial has been discontinued and the Extended Access Program will end in November 2024. Patients will need to discontinue lorcaserin by October to complete final study visits no later than November. Unfortunately, there will no
Discontinuation of Studies and Manufacturing of Lorcaserin Read More »
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 »
2024 is proving to be a promising year for the advancement of targeted therapies for Dravet syndrome, including some newly enrolling clinical studies to investigate a novel genetic-based therapy from Encoded Therapeutics which we will discuss further in today’s blog post. Dravet syndrome is caused by mutations in one copy of the SCN1A gene, which
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 »
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