St. Vitus Dance
New York City, New York | Radio & Podcasts
Documentary, Mystery
Thousands of kids are in agony due to a massive chasm between research and clinical practice for PANS. St. Vitus Dance will push for the clinical and insurance changes that would get effective treatments to every child who needs them.
St. Vitus Dance
New York City, New York | Radio & Podcasts
Documentary, Mystery
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This campaign raised $16,331 for production. Follow the filmmaker to receive future updates on this project.
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Thousands of kids are in agony due to a massive chasm between research and clinical practice for PANS. St. Vitus Dance will push for the clinical and insurance changes that would get effective treatments to every child who needs them.
About The Project
- The Story
- Wishlist
- Updates
- The Team
- Community
Mission Statement
The Story
On September 26, 2025, my eight-year-old child went to bed fine and woke up a different child.
Suddenly, she was wailing in agony, her muscles jerking uncontrollably, with a wild yet deadened look in her eyes. She couldn’t sleep or eat. She couldn't wear clothes. She stopped being able to answer questions or have a conversation. For seven months, she was largely unreachable. The child we knew, the one who memorized bird calls and sang in a Broadway vibrato and once told me on the way to school that she didn't think she was going to tell anyone she was famous, went missing.
Her illness is called PANS, Pediatric Acute-onset Neuropsychiatric Syndrome, which is a neuroimmune illness in which the immune system attacks the brain, usually triggered by an infection. It causes sudden, catastrophic psychiatric symptoms in children — OCD, aggression, regression, loss of speech — that are almost universally misdiagnosed as psychiatric illness.
One effective treatment is IVIG, and it seems to work for her. Within 24 hours of her second dose, her eyes brightened and she regained the ability to have a conversation. On April 22, she hugged me goodnight for the first time this year.
Trying to access that treatment was like running repeatedly into a brick wall.
PANS is researched and treated at Stanford, Dartmouth, Harvard, Mass General. And yet the American Academy of Pediatrics issued a clinical report in early 2025 (with anonymous authors, the only anonymous clinical report they've issued in years) that has been used by insurance companies to deny most IVIG claims for PANS. A recent study found that 58% of families whose children need this treatment have had to borrow money or sell major assets to access it.
We waited 7 agonizing months, and we are some of the lucky ones.
St. Vitus Dance is an eight-episode audio documentary about what is happening to these children and why.
It's produced by the inimitable Helena de Groot, whose work has screened at Tribeca and won the Audie Award. In the tradition of The Retrievals, it’s a medical mystery told as a narrative that uses emotional depth to shed light on a systemic issue.
A feature I wrote about PANS and Khalia is running in New York Magazine this summer and this podcast is the next step.
How you can help
A $20,000 pilot will let us produce part of the pilot episode — the proof of concept that unlocks larger funding and distribution partnerships already in conversation. Every dollar from this campaign goes directly into the production costs.
Thank you
Wishlist
Use the WishList to Pledge cash and Loan items - or - Make a pledge by selecting an Incentive directly.
Immunology research fact checking
Costs $2,000
the facts of the story must be unimpeachable!
Audio Engineering and Editing
Costs $15,000
The production quality of the podcast must be professional and lend creditability to the topic
Audio gear
Costs $3,000
mics, etc.
Cash Pledge
Costs $0
Direct link:
Share this update!
About This Team
Jessica Slice is a journalist, essayist, and the author of Unfit Parent: A Disabled Mother Challenges an Inaccessible World, one of NPR's top books of 2025. Her writing has appeared in the New York Times, the Washington Post, the Wall Street Journal, The Atlantic, and Modern Love. She lives in Toronto.
Helena de Groot is an audio producer, host, and sound designer. Her work includes the Paris Review Podcast, named one of the New Yorker's best podcasts of 2021; Poetry Off the Shelf for the Poetry Foundation; Aria Code with WNYC; and the Pushkin audiobook Wild and Precious: An Ode to Mary Oliver, a 2024 Audie Award winner and LA Times Book Prize finalist. Her CBC audio memoir Creation Myth is an Official Selection for the Tribeca Festival 2025.
Current Team
Incentives
- The Story
- Wishlist
- Updates
- The Team
- Community
Mission Statement
The Story
On September 26, 2025, my eight-year-old child went to bed fine and woke up a different child.
Suddenly, she was wailing in agony, her muscles jerking uncontrollably, with a wild yet deadened look in her eyes. She couldn’t sleep or eat. She couldn't wear clothes. She stopped being able to answer questions or have a conversation. For seven months, she was largely unreachable. The child we knew, the one who memorized bird calls and sang in a Broadway vibrato and once told me on the way to school that she didn't think she was going to tell anyone she was famous, went missing.
Her illness is called PANS, Pediatric Acute-onset Neuropsychiatric Syndrome, which is a neuroimmune illness in which the immune system attacks the brain, usually triggered by an infection. It causes sudden, catastrophic psychiatric symptoms in children — OCD, aggression, regression, loss of speech — that are almost universally misdiagnosed as psychiatric illness.
One effective treatment is IVIG, and it seems to work for her. Within 24 hours of her second dose, her eyes brightened and she regained the ability to have a conversation. On April 22, she hugged me goodnight for the first time this year.
Trying to access that treatment was like running repeatedly into a brick wall.
PANS is researched and treated at Stanford, Dartmouth, Harvard, Mass General. And yet the American Academy of Pediatrics issued a clinical report in early 2025 (with anonymous authors, the only anonymous clinical report they've issued in years) that has been used by insurance companies to deny most IVIG claims for PANS. A recent study found that 58% of families whose children need this treatment have had to borrow money or sell major assets to access it.
We waited 7 agonizing months, and we are some of the lucky ones.
St. Vitus Dance is an eight-episode audio documentary about what is happening to these children and why.
It's produced by the inimitable Helena de Groot, whose work has screened at Tribeca and won the Audie Award. In the tradition of The Retrievals, it’s a medical mystery told as a narrative that uses emotional depth to shed light on a systemic issue.
A feature I wrote about PANS and Khalia is running in New York Magazine this summer and this podcast is the next step.
How you can help
A $20,000 pilot will let us produce part of the pilot episode — the proof of concept that unlocks larger funding and distribution partnerships already in conversation. Every dollar from this campaign goes directly into the production costs.
Thank you
Wishlist
Use the WishList to Pledge cash and Loan items - or - Make a pledge by selecting an Incentive directly.
Immunology research fact checking
Costs $2,000
the facts of the story must be unimpeachable!
Audio Engineering and Editing
Costs $15,000
The production quality of the podcast must be professional and lend creditability to the topic
Audio gear
Costs $3,000
mics, etc.
Cash Pledge
Costs $0
Direct link:
Share this update!
About This Team
Jessica Slice is a journalist, essayist, and the author of Unfit Parent: A Disabled Mother Challenges an Inaccessible World, one of NPR's top books of 2025. Her writing has appeared in the New York Times, the Washington Post, the Wall Street Journal, The Atlantic, and Modern Love. She lives in Toronto.
Helena de Groot is an audio producer, host, and sound designer. Her work includes the Paris Review Podcast, named one of the New Yorker's best podcasts of 2021; Poetry Off the Shelf for the Poetry Foundation; Aria Code with WNYC; and the Pushkin audiobook Wild and Precious: An Ode to Mary Oliver, a 2024 Audie Award winner and LA Times Book Prize finalist. Her CBC audio memoir Creation Myth is an Official Selection for the Tribeca Festival 2025.