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23. Here's an Ally: Dravet Syndrome Foundation ft. Mary Anne Meskis
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This week's episode is with Mary Anne Meskis, a founding member and the Executive Director of the Dravet Syndrome Foundation (DSF)—a nonprofit dedicated to raising awareness, providing support, and funding research for Dravet syndrome.
Dravet syndrome is a rare and severe form of epilepsy that begins in early childhood, typically caused by a mutation in the SCN1A gene. It leads to frequent and prolonged seizures, developmental delays, and other lifelong challenges, including changes in appetite, mobility, sleep, and growth. While anti-seizure medications are used to manage symptoms, seizure control remains a significant challenge, which we dive into in this episode.
Mary Anne and I discuss the critical gap in Dravet syndrome research and how DSF bridges it by increasing research funding and supporting initiatives like the Dravet Genome Study. She also shares how her team simplifies complex scientific information to make it more accessible to families and the broader community. Additionally, we explore DSF's new legislative advocacy program and her vision for the organization's future.
Make sure to subscribe to The Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts!
Follow me on Instagram: @neurologicaldisorderpodcast
Email me at: [email protected]
DSF Instagram: @dravetsyndromefoundation
Helpful resources:
- https://dravetfoundation.org/
- https://www.ninds.nih.gov/health-information/disorders/dravet-syndrome
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