Decoding Dravet Blog

As we embark on a new year, I encourage you to make the most of your involvement with DSF by exploring the various programs and engagement opportunities available in 2025. Remember our tagline: Community. Research. Progress. DSF offers something for everyone in our community, providing plenty of ways to get involved and make a difference! […]

DSF’s Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome. They take place on opposite years of our biennial

We are excited to announce that DSF is launching its first Community Book Club and we can’t wait to share this experience with you! The book club will be led by Austin Watson, Family Network Coordinator. She has selected our first read, Microjoys: Finding Hope (Especially) When Life is Not Okay by Cyndie Spiegel. Austin

We are excited to share some recent changes to our staff with the community! Melissa O’Bryan is joining our team as our new Administrative Assistant. Melissa is a proud wife and mom of four boys: Conner, Dylan, Owen and Grady. Her son, Owen, had his first seizure when he was six months old which eventually

At the end of each year, I, along with our Board of Directors, conducts a comprehensive review of our strategic priorities for the upcoming year, ensuring they are in alignment with our long-term goals outlined in our current 5-year Strategic Plan. This review includes assessing current progress, identifying key challenges, and determining new objectives that

This year there has been remarkable for progress and impact in the field of Dravet syndrome – a fantastic way to mark DSF’s 15th anniversary! Thanks to the collective dedication of our community and the generosity of our supporters, we have several major accomplishments to celebrate in 2024: We hosted our 6th DSF Family &

Earlier this December, DSF Staff and Board Members attended the 2024 American Epilepsy Society Meeting to learn about the exciting advancements occurring in epilepsy research, make connections and cement current collaborations, advocate for and seek out new research opportunities, and raise awareness of Dravet syndrome and the work of DSF and the patient-community to support

The 15th Annual Research Roundtable took place in Los Angeles, California on Thursday evening the 5th of December 2024. The night began with an announcement of the 2024 DSF Grant Awards, which included funding for five grants totaling $1.4M. The evening’s event then kicked off with DSF’s Scientific Director, Veronica Hood, PhD recounting some of the impressive

At last night’s 15th Annual DSF Research Roundtable, we announced the 2024 Grant Awardees. DSF is proud to be awarding a total of $1.4M to five research grants, bringing the total amount DSF has directed to research to over $10.5M since funding our first grant in 2010. This year’s funding focuses on several promising approaches

In today’s blog post, I answer some frequently asked questions surrounding SCN1A mutations and the diagnosis of Dravet syndrome. Understanding the relationship between a genetic testing result and a clinical diagnosis, not to mention predicting long-term outcomes, can be challenging and the relationships are not always clear cut. The majority of cases of Dravet syndrome