Epilepsy Sparks Insights

How To Be Safer During Seizures: SafeSteps! - Daniel Goldenholz

Epileptologist Daniel Goldenholz shares his innovative approach to using 3D printing technology to create practical tools for epilepsy care! He tells us about the evolution of his products - designed to assist caregivers/public during seizures. He also explains how accessible, customisable, and durable they are, and chats about the importance of community engagement and collaboration to spread awareness and provide support for those affected by an epilepsy!
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🔗 Safesteps platform 👇🏻
https://sites.google.com/site/danielgoldenholz/Home/safesteps-platform 
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🔗 Website & more about Daniel 👇🏻
 
https://www.torierobinson.com/epilepsy-sparks-insights/daniel-goldenholz-safesteps
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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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Flaccid? Dry? Disinterested? There’s Help! - Jenny Edwards

Epilepsy Specialist Nurse Jenny Edwards, shares how she supports people who experience sexual dysfunction and epilepsy, focusing on the importance of open communication and building trust with patients. She emphasises the need for a holistic approach to care, including mental health support, and the significance of understanding the different types of epilepsy and their impacts on patients' lives. The chat highlights the challenges patients face in discussing sensitive topics and the vital role nurses play in facilitating these conversations.
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🔗 Website & more about Jenny: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/jenny-edwards-flaccid-dry-disinterested 
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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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Let’s Talk About Sex - Jenny Edwards

Sex! It's a key part of the lives of homo sapiens - including those with an epilepsy! Epilepsy Specialist Nurse Jenny Edwards shares how sexual dysfunction is more common in people with an epilepsy and how she provides support to her patients affected - whether issues be libido, dating, arousal, orgasm, penetration, masturbation, emotional relationships - anything, really! This is part 1 of 2 with Jenny.
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🔗 Website & more about Jenny: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/
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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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Join Us at the Epilepsy Specialist Nursing Section - IEC 2025! - Patty Shafer & Ludivine Rohrer

We hear about the upcoming International Epilepsy Conference (IEC) 2025 in Lisbon - with global lead Epilepsy Specialist Nurses Patty Shafer and Ludivine Rohrer! They talk about the Epilepsy Nursing Section at the conference and why people should attend! Each share how they address the emotional and behavioural aspects of epilepsy and even things like physical exercise! They chat about the significance of empowering nurses, sharing knowledge, and addressing often embarrassing topics related to epilepsy. They emphasise the social aspects of living with epilepsy and the importance of education for both patients and families.
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🔗 Website & more about Patty and Ludivine: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/patty-shafer-ludivine-rohrer-iec-2025-lisbon-epilepsy-nursing-section
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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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🔗 Register for the Nursing Symposium 👇🏻
https://www.ilae.org/congresses/36th-international-epilepsy-congress/section/sectionid/1 
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Why We Need Epilepsy Nurses! - Ludivine Rohrer & Patty Shafer

Epilepsy specialist nurses (ESNs) play a multifaceted role…! Hear all about it from ESN’s Ludivine Rohrer and Patty Shafer who share their responsibilities in patient care, education, and psychosocial support. They also provide insights into the challenges faced by patients and families trying to manage an epilepsy (including all symptoms and morbidities) and emphasise the importance of personalised care for everyone.
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🔗 Website & more about Patty & Ludivine: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/patty-ludivine-ludivine-rohrer-being-epilepsy-nurse 
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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 is “Consciousness” When It Comes To Seizures?! - Dr. Kaley Marcinski Nascimento

What is consciousness?! Paediatric resident Dr. Kayleigh Marcinski Nascimento invites you to take part in a new study aimed at understanding the terminology surrounding “consciousness” during focal  (formerly known as partial) seizures; emphasising the need for clear communication between clinicians and caregivers! The chat also covers the importance of diverse input in research and how the data collected will be used to improve patient care.
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🔗 Link to study - take part! 👇🏻
www.surveymonkey.com/r/epilepsytalk 
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🔗 Website & more about Kaley Marcinski Nascimento: 👇🏻
www.torierobinson.com/epilepsy-sparks-insights/kaley-marcinski-nascimento-consciousness 
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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
www.epilepsysparks.com/glossary 
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Zebrafish - Breakthroughs In Epilepsy Drug Discovery?! - Prof. Deborah Kurrasch

Neuroscientist Deborah Kurrasch talks about her cool research into the epilepsies using zebrafish! She explains the challenges faced in acceptance of using zebrafish as a model system for epilepsy research and shares how we need to explore new mechanisms of action if we are going to figure out how to help the remaining 30% of people who cannot (yet!) have their seizures controlled using anti-seizure medications!
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🔗 Website & more about Deborah: 👇🏻
https://torierobinson.com/epilepsy-sparks-insights/deborah-kurrasch-zebra-fish-dee-pharma 
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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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Epilepsy Awareness & Advocacy in Zambia! - Dr Naluca Mwendaweli-Beckford

Adult Neurologist Naluca Mwendawe-Beckford chats about her work in Zambia, focusing on the challenges of treating epilepsy in a low-resource setting. She highlights the limited access to diagnostic tools and medications, the roles of neurologists and traditional healers (and how they can work together!), and the importance of education and awareness in combating stigma. Naluca also shares her plans for an epilepsy registry and the need for policy advocacy to improve care for individuals with epilepsy in Zambia.
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🔗 Website & more about Naluca: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/naluca-beckford-epilepsy-awareness-zambia
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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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Your Brain: Mossy Cells and the Fight Against Epilepsy - Prof Helen Scharfman

Helen Scharfman, a professor at NYU and a research scientist, discusses her extensive research on the epilepsies; particularly focusing on mossy cells in the temporal lobe! She explains the significance of these cells in understanding seizures and anxiety, and the potential for future treatments/preventions! Helen emphasises the importance of patient involvement in research and the international, collaborative nature of scientific discovery!
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🔗 Website & more about Helen: 👇🏻
https://torierobinson.com/epilepsy-sparks-insights/helen-scharfman-mossy-cells-international-research 
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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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Revolutionising Epilepsy Perceptions & Care in Pakistan - Dr. Zarine Mogal

Epileptologist Zarine Mogal has changed the world for many affected by the epilepsies in Pakistan! She shares her incredibly impactful 3 decades in diagnoses, care, and social acceptance - through her comprehensive epilepsy program. Zarine highlights the importance of sustained epilepsy awareness with insights on measuring the impact of campaigns, the challenges faced in healthcare, and the future directions for improving epilepsy care in Pakistan. 
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🔗 Website & more about Zarine: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/zarine-mogal-epilepsy-pakistan-stigma-treatment-gap 
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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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