Torie Robinson

@torierobinson.bsky.social

🎬 Epilepsy Sparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | PPI Lead | #Epilepsy & #MentalHealth Research fiend | All views my own

It's Reetta Kälviäinen 🇫🇮: "Beyond the Myoclonus: Recognizing the Clinical Face of PMEs (Progressive Myoclonic Epilepsy) EPM1 epilepsy" Reetta shared how the best epilepsy research is done with patients and families. And not just with the usual "awareness" activities it's research collaboration. 1/

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Amazing panel discussion and notes: What defines a DEE? How "severe" must symptoms be? Is it a matter of association of clinical and EEG findings above a certain aetiogy? Is it a pathophysiological rather than a clinical concept? Is it not a static but dynamic concept? 1/

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😀 Second day of the #DICE2026 epilepsy conference in Denmark! First speakers are: 〰️ Nicola Specchio 🇮🇹: "DEE: Classification and Current Concepts" 〰️ Lieven Lagae 🇧🇪: "Challenges in the Current Classification of DEEs" 1/2

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In prep for the UCB EpilepSEE conference in Chicago! We start tomorrow, with some incredible global collaborators - the start of a new project to improve the lives of those affected by epilepsy. Global experts inc. Prof. Reetta Kalviainen, Landis Wiedner, Alison Kukla, & Ivana Garcia. #epilepsy

Chicago, IL

Thank you to such a cool audience for being with me for a 55min keynote talk about how they can become involved/leaders in #epilepsy research - using their Epilepsy Experience Expertise. Thank you to Prof. Jacqueline French and Caitlin Grzeskowiak of the Epilepsy Foundation for the invitation.

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