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.
Dravet Syndrome Awareness Month takes place each June in the U.S., and International Dravet Syndrome Awareness Day is observed on June 23rd. This year, we are once again recognizing those that we have lost on our 4th annual Remembrance Day on June 15, 2024. Dravet Remembrance Day is a time for our community to reflect […]
Remembrance Day – June 15th Read More »
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 »
This June, take action. Do your part (big or small) to give the Dravet syndrome community the recognition it deserves during Dravet Syndrome Awareness Month. Like & Share our Posts: Get connected with us on our social media channels so you can like and share our posts throughout June. Spread Awareness on Social Media: This
Dravet Syndrome Awareness Month 2024 Read More »
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 &
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 »
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 »
In a world where thousands of causes are vying for attention and support, T-shirt fundraisers have emerged as a powerful tool in the realm of fundraising. You can see this by looking in anyone’s closet and if you’re like me, your drawer is filled to the brim with shirts from all different kinds of causes.
Get your DSF t-shirt for Dravet Awareness Month! 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 »
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