Decoding Dravet Blog

Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. The Decoding Dravet Blog will keep you up to date on current research, treatment options, advocacy efforts, community activities, and other topics that are important to the Dravet syndrome community.

 15 Years of Raising Awareness of Dravet Syndrome

This year commemorates the 15th anniversary of DSF! We eagerly anticipate celebrating the initial 15 years of our impactful journey with you throughout 2024, sharing the highlights of what our community has accomplished through DSF: 15 years of funding groundbreaking research.  15 years of connecting and supporting families. 15 years of raising awareness of Dravet

 15 Years of Raising Awareness of Dravet Syndrome Read More »

Chat & Connect

DSF hosts monthly online sessions to offer caregivers the opportunity to connect and engage with peers, to support one another, as well as to ask questions of DSF and its staff. We know that exposure to stories, insights, and information sharing is particularly helpful when you are caring for someone with Dravet syndrome. Chat &

Chat & Connect Read More »

DSF-Funded Clinico-Genomics Research Study Now Recruiting for Remote Participants

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

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Encoded Therapeutics begins enrolling first in-human trials for ETX101, a potential one-time, disease-modifying gene regulation therapy for SCN1A+ Dravet syndrome

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

Encoded Therapeutics begins enrolling first in-human trials for ETX101, a potential one-time, disease-modifying gene regulation therapy for SCN1A+ Dravet syndrome Read More »

AI-Powered Progress: Transforming Epilepsy Care and Research with Technology

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 »

15 Years of Connecting & Supporting Families

This year commemorates the 15th anniversary of DSF! We eagerly anticipate celebrating the initial 15 years of our impactful journey with you throughout 2024, sharing the highlights of what our community has accomplished through DSF: 15 years of funding groundbreaking research.  15 years of connecting and supporting families. 15 years of raising awareness of Dravet

15 Years of Connecting & Supporting Families Read More »

Updates on STK-001: A Possible Disease-Modifying Therapy for Dravet Syndrome

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 »

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