Epilepsy Sparks Insights

Research Fellow Georgia Cook explains the challenges of and positive impacts of positive, effective communication upon patient and family Quality of Life, the importance of qualitative research engagement and how it compliments quantitative research, and strategies to improve patient communication in an epilepsy trial. This is part 2 of 2 with Georgia. ------------------------------------------ 🔗 Website & more about Georgia: 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/georgia-cook-communication-barriers-in-epilepsy-research -----------------------------------------

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. ------------------------------------------ 🔗 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. ------------------------------------------ 🔗 Website & more about Georgia: 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/georgia-cook-tightrope-of-communication  ______________

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 ----------------------------------------- 🔗 Website & more about Manuel 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/manuel-toledo-travelling-epilepsy ----------------------------------------- Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary  ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10

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.. ----------------------------------------- 🔗 Website & more about Glenn 👇🏻 www.torierobinson.com/epilepsy-sparks-insights/glenn-king-treating-epilepsy-with-spider-venom ----------------------------------------- Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10

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! ----------------------------------------- 🔗 Website & more about Eleni 👇 https://www.torierobinson.com/epilepsy-sparks-insights/eleni-panagiotakaki-ahc-grin-genetic ----------------------------------------- Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇 https://www.epilepsysparks.com/glossary  ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10

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. ------------------------------------------ Website, transcript, & more about Clio: 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/clio-rubinos-acute-symptomatic-seizures ----------------------------------------- Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary  ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10

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! ----------------------------------------- 🔗 Website & more about Zelekha 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/zelekha-seedat-opm-meg-young-epilepsy  ----------------------------------------- Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary  ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10

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! ----------------------------------------- 🔗 Transcript & more about Christine 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/christine-embury-opm-meg-young-epilepsy  ----------------------------------------- Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇 https://www.epilepsysparks.com/glossary  ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10

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. ------------------------------------------ 🔗 Website & more about Reza: 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/reza-shervin-badv-iran-epilepsy-stigma ______________ Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary  ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10

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! ------------------------------------------ 🔗 Website & more about Mona: 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/mona-heiland-newly-discovered-molecule-microrna-335 ----------------------------------------- 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 ----------------------------------------- Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary  ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10

Physicist Sjoerd Vos shares his research in neuroimaging; aiming at decreasing language decline caused by temporal lobe resections! ----------------------------------------- 🔗 Website & more about Sjoerd https://www.torierobinson.com/epilepsy-sparks-insights/sjoerd-vos-physics-mri-temporal-lobe-epilepsy-resection-cognitive ----------------------------------------- Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇 https://www.epilepsysparks.com/glossary  ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10

Eduardo Pérez Palma, a neurogenetics scientist and bioinformatician, discusses his work in neurogenetics and epilepsy research, emphasising the importance global collaboration in studying the epilepsies in different parts of the world! Eduardo also shares the upcoming Latin American Congress on Genetic Epilepsiesin Jan 2025; which aims to bring together experts from various fields to share knowledge and perspectives! ------------------------------------------ 🔗 Website & more about Eduardo: 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/eduardo-perez-palma-neurogenetics-dee-latin-america  ----------------------------------------- Chapters 📖 - Intro to Eduardo - The Value of Genetic Testing in Epilepsy - Diversity and Representation in Genetic Research - Understanding Developmental Epileptic Encephalopathies (DEEs) - Contributing to Epilepsy Research - Latin American Congress on Epileptsy Genetics - Conclusion & thanks ----------------------------------------- Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary  ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10    #genetics #neurogenetics #exomesequencing #epilepsy

Learn of exciting research into a drug screening platform for personalised medicine for the epilepsies - through adult neurologist and researcher Patrick Kwan; head of the Kwan Lab! Patrick describes the process of extracting stem cells from blood, culturing them, and using them to develop new treatments for drug-resistant epilepsy. The conversation highlights the importance of collaboration and data sharing in epilepsy research. ----------------------------------------- 🔗 Website & more about Patrick👇 https://www.torierobinson.com/epilepsy-sparks-insights/patrick-kwan-advances-stem-cell-research-epilepsy ----------------------------------------- Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇 https://www.epilepsysparks.com/glossary  ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10

People with an epilepsy might be nervous about getting "gene therapy" - but in today's mini-episode, in part 2 of 2, epileptologist José M Serratosa is asked if he would get gene therapy and why(!), explains the use of viral vectors for treating genetic epilepsies, where we are in preclinical development, what is next, and what is also holding us back! ------------------------------------------ 🔗 Transcription & more about José: 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/jose-m-serratosa-gene-therapies-viral-vectors  ----------------------------------------- Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary  ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10        #epilepsy #genetherapy #genetics #vectors #viralvectors #lafora

What does the future for epilepsy treatments hold?! Epileptologist José M Serratosa shares his predictions for epilepsy gene therapies; highlighting the importance of addressing all symptoms - including cognitive, motor, and psychiatric - as well as the seizures. Jose explains the role of viral vectors and how they may save people! This is part 1 of 2 with José - in part 2, the conversation goes into the challenges of research clinical trials for these therapies; from basic, to pre-clinical, to clinical! ------------------------------------------ 🔗 Transcription & more about José: 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/jose-m-serratosa-future-epilepsy-gene-therapies  ----------------------------------------- Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary  ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10        #epilepsy #genetherapy #genetics #vectors #viralvectors #lafora

Michael Sperling, a prof of neurology and director of the Jefferson Comprehensive Epilepsy Center, educates us on laser ablation therapy for epilepsy! He and Torie discuss the minimally invasive nature of the procedure, its advantages over traditional open surgery, and its efficacy in reducing seizures. They also touch on the suitability of the therapy for different age groups and types of epilepsy. The conversation highlights the precision and safety of laser ablation therapy and its potential to improve outcomes for patients. ----------------------------------------- Michael’s related papers 📜 https://www.researchgate.net/profile/Michael-Sperling-2   ______________

Who knows about Acute Symptomatic Seizures and how the babies and children experiencing them can be carefully weaned off of the anti-seizure medications they are on? Paediatric neurologist and epilepsy specialist Maria Gogou from University General Hospital of Alexandroupolis, Greece, explains more. Paediatric neurologist and epilepsy specialist Maria Gogou from University General Hospital of Alexandroupolis, Greece, explains more.  ----------------------------------------- 🔗 Website & more about Maria 👇 https://www.torierobinson.com/epilepsy-sparks-insights/maria-gogou-acute-symptomatic-seizures-weaning-babies-asms  ----------------------------------------- Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇 https://www.epilepsysparks.com/glossary  ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10

Children may benefit from being weaned off of anti-seizure medications when they are on the ketogenic diet. Plus, find out how the ketogenic diet can significantly benefit children with epilepsy - even when it doesn’t control their seizures! Paediatric neurologist Maria Gogou discusses her work in managing rare and complex epilepsies in children. ----------------------------------------- 🔗 Paper: “Antiseizure medication reduction and withdrawal in children with drug-resistant epilepsy after starting the ketogenic diet” 👇 https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.15377 ----------------------------------------- 🔗 Website, transcription, & more about Maria 👇 https://www.torierobinson.com/epilepsy-sparks-insights/maria-gogou-staying-on-a-keto-diet-that-doesnt-work-dravet ----------------------------------------- Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇https://www.epilepsysparks.com/glossary  ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10

David Henshall shares how information gathered when researching worms led to the discovery of microRNA, a far improved understanding of the epilepsies, and potential treatments - all explained in his new book (link below)! This is episode 2 of 2. ----------------------------------------- David’s book  📖 https://www.amazon.co.uk/Fine-Tuning-Life-MicroRNAs-Genomes-Regulators/dp/1009466429/ref=sr_1_1 ----------------------------------------- 🔗 Website & more about David: 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/david-henshall-micro-rna-epilepsy  ----------------------------------------- Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary  ------------------------------------------ 📲 Join me on social media! - X: https://twitter.com/torierobinson10  - LinkedIn: https://www.linkedin.com/torierobinson  - Instagram: https://www.instagram.com/torierobinson10  - Facebook: https://www.facebook.com/TorieRobinsonSpeaker  - TikTok: https://www.tiktok.com/@torierobinson10  #epilepsy #mrna #genetics #geneticepilepsy #DavidHenshall