When my daughter Avery was diagnosed with Dravet syndrome at just 10 months old, I wondered what her life would look like. I knew it would be different from that of her peers, particularly as she grew older. Some of my greatest questions became: Will she have friends? Will…
June is Dravet Syndrome Awareness Month, and advocacy groups in the U.S. and U.K. are launching initiatives to raise awareness of Dravet syndrome and raise funds to fuel research and support families affected by this condition. In the U.S., this month of awareness is being…
Discussion
I woke up and rolled over to the ordinary sight of my daughter, Avery, lying beside me. Her long, underweight body wrapped up in the blankets is an everyday reminder that our life and sleeping arrangement are unique. Most nights, it’s impossible to forget she is there. Her lanky legs…
A one-time treatment with Encoded Therapeutics’ experimental gene therapy ETX101 was generally well tolerated and associated with seizure reductions for up to one year in children with Dravet syndrome, a severe form of epilepsy that begins in infancy. That’s according to new data from the first phase of…
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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