The Neurological Disorder Podcast
The Neurological Disorder Podcast is a podcast created by Mridula Bharathi, a young changemaker and advocate for neurological disorders. In this podcast, she interviews people who are affected by neurological diseases, and they share their incredible stories as a fighter of the disorder. She also talk with doctors and surgeons who are experts on these disorders, researchers who are working to find cures for them, and more! Through this podcast, she hopes to spread awareness for these neurological conditions so more people can stay informed, look out for early signs of these sometimes debilitating conditions, and be involved in creating a change, through legislative advocacy and community awareness, to improve care for everyone impacted by neurological diseases.
The Neurological Disorder Podcast
23. Here's an Ally: Dravet Syndrome Foundation ft. Mary Anne Meskis
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: neurologicaldisorderpodcast@gmail.com
DSF Instagram: @dravetsyndromefoundation
Helpful resources:
- https://dravetfoundation.org/
- https://www.ninds.nih.gov/health-information/disorders/dravet-syndrome