NIH Epilepsy Resources

These informational materials are based on a multi-year, multi-site study of pediatric drug resistant epilepsy and neurotechnological treatments funded by the National Institutes of Health (NIH). Links to the articles from which this information is derived may be found below.


Seizing Hope: High Tech Journeys in Pediatric Epilepsy is a mini-documentary about hope for children and their families in mitigating and treating pediatric drug resistant epilepsy (DRE). It is a story about how families learn to trust their medical team, educate them, and help them consider neurotechnology options for their child. It is a story about empowerment as loved ones shed light on the ethical factors that led to their decisions. In doing so, they empower other families that face similar challenges to theirs.

It is a story of how children and families affected by DRE can seize hope in times of darkness for a better quality of life.

The film may be viewed in English with subtitles in French or Spanish.

Technical Info
Running Time: 30 minutes
Genre: Mini-documentary
Subtitles: English, French, Spanish
Year of Production: 2021

Seizing Hope was filmed on the traditional, ancestral, and unceded lands of the Musqueam (xʷməθkʷəy̓əm) Nation in the University of British Columbia Vancouver, the Musqueam(xʷməθkʷəy̓əm), Squamish (Sḵwx̱wú7mesh), and Tsleil-Waututh (Sel̓íl̓witulh) Nations in the City of Vancouver, Očhéthi Šakówiŋ, Michif Piyii (Métis), and Anishinabewaki Nations in Winnipeg, the Očhéthi Šakówiŋ, Michif Piyii (Métis), Cree, and Anishinabewaki Nations in Kleefeld, and the Anishinabewaki, Mississauga, Haudenosaunee (Ho-de-no-sau-nee-ga ), and the Wendake-Nionwentsïo Nations in Oshawa and the City of Toronto.

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CLINICAL TRIALS
Kaal, K. J., Aguiar, M., Harrison, M., McDonald, P. J., & Illes, J. (2020). The Clinical Research Landscape of Pediatric Drug-Resistant Epilepsy. Journal of Child Neurology.
Link: https://doi.org/10.1177/0883073820931255

MEDIA
Munjal, V., Arakelyan, M., McDonald, P. J., & Illes, J. (2020). Epilepsy through the eyes of the media: A paradox of positive reporting and challenges of access to advanced neurotechnology. Epilepsy & Behavior, 111.
Link: https://doi.org/10.1016/j.yebeh.2020.107200

YOUTH
Udwadia, F. R., McDonald, P. J., Connolly, M. B., Hrincu, V., & Illes, J. (2020). Youth Weigh In: Views on Advanced Neurotechnology for Drug-Resistant Epilepsy. Journal of Child Neurology.
Link: https://doi.org/10.1177/0883073820957810

PHYSICIAN
McDonald, P. J., Hrincu, V., Connolly, M. B., Harrison, M. J., Ibrahim, G. M., Naftel, R. P., Chiong, W., Udwadia, F., & Illes, J. (2020). Novel Neurotechnological Interventions for Pediatric Drug-Resistant Epilepsy: Physician Perspectives. Journal of Child Neurology.
Link: https://doi.org/10.1177/0883073820966935

CAREGIVER
Hrincu, V., McDonald, P. J., Connolly, M. B., Harrison, M. J., Ibrahim, G. M., Naftel, R. P., Chiong, W., Armaghan, A., Ribary, U., & Illes, J. (2021). Choice and Trade-offs: Parent Decision Making for Neurotechnologies for Paediatric Drug-Resistant Epilepsy. Journal of Child Neurology.
Link: https://doi.org/10.1177/08830738211015010

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