Dear Friends,

Your voice matters to us. We want the Dravet syndrome patient community to be heard in order to educate others.

Back on February 3, 2022, we brought your voice to a virtual Externally-Led Patient-Focused Drug Development meeting on Dravet syndrome. During the meeting, we were able to educate representatives of the Food and Drug Administration (FDA) and pharmaceutical companies, as well as academic researchers and clinicians, about the challenges that individuals living with Dravet syndrome face daily.

Thank you to the patient panelists, phone callers, and individuals who bravely chose to share their experiences to support this effort. With this input, we documented the significant physical and emotional impact on people living with Dravet syndrome and our hope for future treatments.

View our Voice of the Patient Report to hear from our patient community and learn more about this meeting.

Warmly,

Dravet Syndrome Foundation

Newly Diagnosed? We Are Here For You.

We understand that receiving a diagnosis of Dravet syndrome can be overwhelming, and it may leave you with many unanswered questions. Our Newly Diagnosed Resources Page is here to provide you with a place to start understanding more about what a diagnosis means by providing you with information you can trust. We encourage you to approach the diagnosis with anticipatory optimism and remember that our DSF community is always here to support you!

News and Events

• Behind The Mystery - We’re excited to share that Behind the Mystery of Dravet Syndrome will reair on Lifetime on 8/22 and 8/30!

• Steps Toward a Cure - Steps Toward a Cure is a series of family-friendly events that raise awareness and funds while celebrating our Dravet superheroes. These events take place throughout the year, in communities nationwide. We would love for you to bring Steps Toward a Cure to your area! Upcoming Steps Toward a Cure events:

  • Steps Toward a Cure: Desloge Chamber

  • Steps Toward a Cure: Seattle

  • Steps Toward a Cure: Toledo

  • Steps Toward a Cure: Schaumburg

  • Steps Toward a Cure: Virtual

• DSF Casino Night - Our Casino Night Fundraiser includes casino games, dinner, sponsorships, live and silent auctions, and more. It is a great excuse for adults to have a fun night out while supporting a cause they care about! Find an upcoming Casino Night in your area, or we'd love for you to host your own! Upcoming Casino Night events:

  • Double Down for Dravet: Frisco

  • Double Down for Dravet: Houston

• Dance for Dravet - Dance for Dravet is an annual fundraising event organized by the Brennan and Odlaug families to raise funds for the Dravet Syndrome Foundation. This year's event will take place on October 14 at Third Degree Glass Factory in St. Louis, Missouri.