Decoding Dravet Blog

Dravet Syndrome Foundation (DSF) was established in 2009 with a mission largely focused on funding and advocating for Dravet-related research. To date, DSF has directed over $10.5 million to support research. DSF’s Research Grant Programs provide essential funding for research focusing on Dravet syndrome and related disorders. These grants support early-stage research endeavors exploring hypotheses […]

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

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