Across a group of children with severe childhood epilepsies, including Dravet syndrome, genetic test results did not independently predict long-term seizure or developmental outcomes, according to a new study. “Although … genetic testing has diagnostic and precision-medicine selection utility in childhood-onset [developmental and epileptic encephalopathies], long-term seizure and developmental…
Discussion
When my husband, Jonathan, and I got married 17 years ago, there is no way we could have anticipated the hardship that lay ahead of us. While all marriages and relationships experience some measure of difficulty, the tumultuous seasons and trauma related to our daughter Avery’s Dravet syndrome diagnosis…
Discussion
The first child has received ION337 in an open-label Phase 1/2 study, marking the start of clinical testing of this experimental therapy for Dravet syndrome. The study, called ASCEND (NCT07531745), is recruiting up to 32 children, ages 2 to 12, who have been diagnosed with Dravet syndrome and…
Discussion
“Mom, we need help. Baby is having a seizure.” The words, unclear and jumbled, came from my 10-year-old daughter, Avery, who has Dravet syndrome. Avery loves imaginative play, and her favorite thing to do is play with her baby dolls. Recently, that play has included her baby dolls having…
Becoming educated and informed about Dravet syndrome is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnist’s words of wisdom to help you along on your Dravet syndrome journey.
There is no cure for Dravet syndrome yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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