Epilepsy Sparks

18/12/2025

🤔 What does it really feel like to live with, and care for, someone with an epilepsy like Dravet syndrome?

In our latest two Epilepsy Sparks Insights chats, family experience and clinical perspective come together!

👩‍👦 Rébecca Hubert, mum and Vice Secretary of Alliance Syndrome de Dravet:
“Living with someone who has epilepsy… it’s like living with a cloud over your head; it can rain at any moment.”

🧠 Prof. Rima Nabbout, Professor of Paediatric Neurology:
“Dravet is a complex disease beyond the seizures.”

Watch here 👇
🎬 https://youtube.com/playlist?list=PL8sZRfEez6B55PAEfLGlQNpO1R1oVKETt&si=ZR5efE_4EoStlImu

Sponsored by Biocodex. Editorial control and content decisions remained fully independent with Epilepsy Sparks.

18/12/2025

🤔 What changes when families are truly listened to in epilepsy care?!

🎬 Rébecca: https://youtu.be/XxBvdXrQmi8
🎬 Rima: https://youtu.be/rRB5yLKBFIA

Today we’re sharing two linked episodes on Dravet Syndrome - one from a family perspective, one from a clinical/neurologist's perspective.

Both mum Rébecca Hubert and paediatric neurologist Prof. Rima Nabbout look beyond seizure control - they identify the realities that families live with every day. They talk about what clinicians can learn when those experiences are taken seriously.

🎧 You can also listen via your usual podcast app or via epilepsysparks.com. Or(!) just type in "epilepsy sparks insights" into your search engine!

These episodes were sponsored by Biocodex. Editorial control remained fully independent.

04/12/2025

What does “consciousness” actually mean during a focal seizure? 🧠🤔
🎬 https://youtu.be/wXatJM4W2tY

In this episode, Prof. Sándor Beniczky 🤩 breaks down the new term “focal consciousness” and why it replaces “focal aware.” He explains how responsiveness and recall work during a seizure and why this clearer language helps clinicians describe what’s really happening!✨

This little update makes seizure terminology simpler, more accurate and easier for people with epilepsy, families and clinicians across all levels of care to use. 💜

Watch the full episode on YouTube! 👇
🎬 https://youtu.be/wXatJM4W2tY

04/12/2025

✨ Why has the term “focal aware” seizure changed?!
And what does “focal consciousness” really mean for people with the epilepsies, clinicians & caregivers?

Insights spoke with Prof. , who led (with )
the update, to break down the new terminology and why it actually makes seizure descriptions clearer, simpler & more accurate. 💜

This update helps standardise care worldwide - and it’s easier to understand than many expect. 💜

🎧 Watch/listen: Link in bio!
What do you think of the new terminology?

04/12/2025

How does the new term “focal consciousness” change how we talk about seizures? 🤔
🎬 https://youtu.be/wXatJM4W2tY

In this new episode, Prof. Sándor Beniczky 🤩 🇩🇰 explains why “focal aware” has been retired, what consciousness really means during a focal seizure, and how clearer terminology helps people with epilepsy, carers, GPs and specialists speak the same language. 🧠✨

Epilepsy Sparks Insights shares conversations with clinicians and researchers from around the world to support better understanding and better care for people living with epilepsy. 💜

Watch the full episode on YouTube! 👇
🎬 https://youtu.be/wXatJM4W2tY

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28/11/2025

Prof. Nicola Specchio 🤩🇮🇹 explains why no single nation can generate all the evidence, training, advocacy or policy change needed to improve epilepsy care!

👉 https://youtu.be/eWXWNjL2FGw

He shares why creating a global minimum standard for diagnosis and treatment - built across regions and networks - could transform lives worldwide. 💜

Watch here! 👉 https://youtu.be/eWXWNjL2FGw

28/11/2025

Could a global minimum standard for epilepsy care really change lives?! 🌍🤔
👉 https://youtu.be/eWXWNjL2FGw

Here’s a short trailer from Torie’s conversation with Prof. Nicola Specchio 🤩 🇮🇹 from Ospedale Pediatrico Bambino Gesù, Epicare ERN, ILAE - International League Against Epilepsy, and Fondazione Epilessia LICE, where he shares why countries working together - rather than acting alone - is essential for fairer diagnostics, treatment access, advocacy and policy change. 💜

A hopeful look at what collaboration can achieve!

👉 https://youtu.be/eWXWNjL2FGw

27/11/2025

Which challenges in epilepsy care are truly global - and which solutions already exist? 🧠✨
👉 https://youtu.be/eWXWNjL2FGw

In our latest podcast episode, Prof. Nicola Specchio 🤩🇮🇹 and Torie dive into early diagnosis, priorities for ILAE - International League Against Epilepsy Europe, the overlap with Epicare ERN, the promise of precision medicine, biomarkers, advanced neuroimaging — and why not all epilepsies are forever.

So much insight in one conversation!

Watch here! 👉 https://youtu.be/eWXWNjL2FGw

27/11/2025

Which challenges in epilepsy care are truly global - and which solutions already exist? 🧠✨

In this episode, Prof. Nicola Specchio 🤩🇮🇹 and Torie dive into early diagnosis, priorities for ILAE Europe, the overlap with EpiCARE, the promise of precision medicine, biomarkers, advanced neuroimaging — and why not all epilepsies are forever.

So much insight in one conversation.

Watch/listen/read via 🔗 link in bio!

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27/11/2025

What would a global minimum standard for epilepsy care look like?! 🤔🧠🌍

👉 https://youtu.be/eWXWNjL2FGw

Prof. Nicola Specchio 🤩🇮🇹 and host Torie Robinson discuss:
• earlier intervention
• priorities for ILAE Europe
• overlap with EpiCARE
• precision medicine, biomarkers, neuroimaging
• and why not all epilepsies are forever 💜

A powerful insight into what fairer care could truly mean.

Watch here: https://youtu.be/eWXWNjL2FGw

27/11/2025

What are the biggest challenges in epilepsy care across the globe? 💜
🎬 https://youtu.be/eWXWNjL2FGw

This week, Torie speaks with Prof. Nicola Specchio 🤩, Chair of ILAE-Europe, about diagnosis delays, treatment inequity, collaboration, stigma, and precision medicine - and how he's going to change things for the better!!

Check out the episode here 👉 https://youtu.be/eWXWNjL2FGw

21/11/2025

Check this out! The new, simple classification has been made to help neurologists understand our seizures better!https://www.ilae.org/files/dmfile/ilaeyes-infographic-2025-sz-classifications.pdf

New seizure classification Infographic released . Check the link in bio and status 🌟