Epilepsy Sparks Insights

Paediatric neurologist, scientist, and PPI Lead Julia Jacobs and Torie Robinson discuss the role of individuals with Lived Experience in research, particularly in the context of the iNeuron project, which focuses on epilepsy, stroke, and dementia. They explore the challenges and opportunities presented by basic science research, the importance of knowledge translation, and the benefits of engaging young researchers. The conversation emphasises the shared experiences across different diseases and the motivation that comes from personal connections in research.

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🔗 Website & more about the study: 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/julia-jacobs-ineuron-lived-experience-basic-science 

Research Fellow Georgia Cook chats about the importance of effective communication between researchers and lay-people in epilepsy research - using the CASTLE study as a great example! She speaks of how the way that patients and families think and prioritise can be different to that of researchers, the vicious cycle between sleep disruption and epileptic seizures, the impacts of COVID upon the study, and why clinicians - neurologists, epileptologists, and epilepsy nurses - must pay attention to sleep in PWE! This is part 1 of 2 with Georgia.

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🔗 Website & more about Georgia: 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/georgia-cook-tightrope-of-communication 

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Manuel Toledo and Torie chat about the importance of but also the challenges in traveling for many people with an epilepsy, including medication management, sleep patterns, and knowing the healthcare systems in different countries! The chat highlights the need for preparation and safety tips for traveling with epilepsy, as well as the significance of sharing experiences to improve patient care.vvvvv

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🔗 Website & more about Manuel 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/manuel-toledo-travelling-epilepsy

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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 

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Glenn King discusses his research in epilepsy and how animal venoms can be utilised to develop new treatments! He explains the mechanisms of ion channels, the diversity of venoms, and the process of identifying effective compounds. The conversation also touches on the challenges of drug development, the potential for personalised medicine, and the future of epilepsy treatment..

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🔗 Website & more about Glenn 👇🏻

www.torierobinson.com/epilepsy-sparks-insights/glenn-king-treating-epilepsy-with-spider-venom

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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻

https://www.epilepsysparks.com/glossary

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Paediatric neurologist Eleni Panagiotakaki discusses her work in paediatric epileptology, focusing on rare epilepsies such as Alternating Hemiplegia of Childhood (AHC) and GRIN disorders. She highlights the challenges in diagnosing and treating these conditions, the variability of symptoms,  the importance of a holistic approach to care, and the role of parents in driving research!

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🔗 Website & more about Eleni 👇

https://www.torierobinson.com/epilepsy-sparks-insights/eleni-panagiotakaki-ahc-grin-genetic

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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇 https://www.epilepsysparks.com/glossary 

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What are Acute Symptomatic Seizures, how do they differ from epileptic seizures, and how can one recover? Who will develop an epilepsy after one and what are the causes?! Think stroke, TBI, tumours, infection, encephalitis, status epilepticus...! Find out all about it from neurocritical care and epileptology specialist neurologist Clio Rubinos.

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Website, transcript, & more about Clio: 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/clio-rubinos-acute-symptomatic-seizures

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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 

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Post-doc researcher Zelekha Seedat discusses her work as a postdoctoral researcher at Young Epilepsy, focusing on Magnetoencephalography (MEG) and the innovative Optically Pumped Magnetometers (OPM) technology. She explains the differences between MEG and EEG, the advantages of OPM technology, and the challenges faced in interpreting data. The conversation also covers the importance of combining EEG with OPM-MEG for better data accuracy, the future potential of OPM-MEG in clinical settings, and how to get involved in her research!

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🔗 Website & more about Zelekha 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/zelekha-seedat-opm-meg-young-epilepsy 

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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 

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Post-doc researcher Christine Embury shares with us her research on the cool OPM-MEG technology for brain imaging - its advantages (particularly for children with refractory epilepsy and considering brain surgery!) and how it could improve patient outcomes and our understanding of developmental trajectories in paediatric epilepsies!  Lastly, Christine and Torie chat about the cost-effectiveness of the device, its benefits from an energy usage/climate change perspective, and how both patients and clinicians can get involved in the research!

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🔗 Transcript & more about Christine 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/christine-embury-opm-meg-young-epilepsy 

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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇 https://www.epilepsysparks.com/glossary 

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Reza Shervin-Badv, a paediatric epileptologist and neurologist talks about the diverse care available for people in Iran, plus the common epilepsy stigma which is being challenged through education and advances in medical care.

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🔗 Website & more about Reza: 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/reza-shervin-badv-iran-epilepsy-stigma

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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 

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Find out about a new epilepsy discovery; how the microRNA-335 molecule impacts people with both Dravet Syndrome and Temporal Lobe Epilepsy, and what this could mean for research going forward! All with post-doc researcher Mona Heiland!

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🔗 Website & more about Mona: 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/mona-heiland-newly-discovered-molecule-microrna-335

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Chapters 📖

00:00 Trailer & Intro

00:45 Meet Mona

01:07 Explaining Sodium Channel Epilepsies

06:03 Understanding MicroRNAs and Their Role in Epilepsy

07:47 Research Findings on MicroRNA-335 and Sodium Channels

10:01 Future Directions in Precision Therapies for Epilepsy

11:18 Conclusion & thanks

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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 

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