Decoding Dravet
Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. This 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.
Why be cautious about sharing personal experiences in an active clinical trial?
With so many clinical trials for Dravet syndrome actively enrolling, it is an important time to consider the impacts that talking about experiences in an ongoing trial can have on the outcomes. If you are participating in a clinical [...]
DSF Programs & Resources for Patient Families
As we roll into 2021, I wanted to remind our community of the many important resources that DSF offers to help patient families on this complex medical journey. We recognize that you deal with a lot each day and [...]
A Recap of “Curing the Epilepsies 2021”
On January 5-7, 2021, the NIH/NINDS (National Institute of Health/ National Institute of Neurological Disorders and Stroke) held the“Curing the Epilepsies 2021: Setting Research Priorities” conference in a virtual format. The goal of the conference was to guide updates [...]
Looking Forward
Wow - what a year! I think we can all agree that 2020 was hard. Even for our community that is accustomed to constantly having to adapt and change plans, as well as go through periods of social isolation [...]
Dravet Syndrome Updates: A Year in Review
Even though I believe all of us are ready to bid goodbye to 2020 and move onto 2021, I wanted to take the time to reflect on and highlight some of the positive things that happened this year. Below [...]
PAME 2020: A Parent’s Perspective
SUDEP and mortality in epilepsy are important but scary topics for the Dravet syndrome community. It is important for our patient families to be informed on new research and updated guidelines to keep their loved ones safe. Every two [...]