Epilepsy Sparks Insights: Recent Episodes
Torie Robinson
Led by Torie Robinson, Epilepsy Sparks Insights is an educational podcast to spark interest in and bridge the gap between epilepsy patients, clinicians, scientists, geneticists – and the world. Follow on Twitter: @TorieRobinson10 & @EpilepsySparks.Visit www.torierobinson.com & www.epilepsysparks.com. NOT FOR CLINICAL OR PATIENT DECISION MAKING
How much do carers really contribute to epilepsy care, & why are their struggles so often invisible? 💜
Dr. Florien Boele, a researcher in psychosocial oncology & caregiving, talks about the essential but often overlooked role of unpaid carers for adults with epilepsy.
Florien talks with Torie about:
- Who carers are
- The staggering £184 billion value that carers add to the UK economy
- The personal costs of caregiving - sleep, stress, health, finances & relationships
- Why epilepsy research rarely includes carers (compared with other diseases)
- The importance of measuring carer outcomes through core outcome sets
- Florien’s study to define what truly matters most to carers
👉🏻 Tune in to hear how research is beginning to highlight carers’ voices & why supporting them means supporting people with epilepsy too.
🔗 More about episode 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/florien-boele-quality-of-life-carers-epilepsy
🤩 More about Florien 👇🏻
https://www.torierobinson.com/guests/florien-boele
👕 Join the Epilepsy Sparks community with our merch 👇🏻
https://epilepsy-sparks.creator-spring.com
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
🎧 Watch episode on YouTube 👇🏻
https://www.youtube.com/@EpilepsySparksInsights
🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
https://www.epilepsysparks.com/glossary
📲 Connect with us 👇🏻
- Website https://www.epilepsysparks.com
- LinkedIn https://www.linkedin.com/company/epilepsy-sparks
- Bluesky https://bsky.app/profile/epilepsysparks.bsky.social
- Instagram https://www.instagram.com/epilepsysparks
- Facebook https://www.facebook.com/epilepsysparks
- TikTok https://www.tiktok.com/@epilepsysparks
Did you know seizure diaries in LGS & Dravet often capture less than half of seizures?! Today we hear from Dr. Ewan Nurse, an engineer & epilepsy researcher in Melbourne, who shares research into seizure reporting in developmental & epileptic encephalopathies (DEEs).
We explore why seizure diaries miss so many seizures, how carers sometimes log non-seizure events, and what that means for families and clinicians. Ewan also talks about the promise & limits of wearable devices, EEG headbands & implants, and why collaboration between engineers, clinicians, carers & families is essential for the future of epilepsy care.
🌐 More about Ewan👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/ewan-nurse-seizure-diaries-eeg-dees-dravet-lgs
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
👕 Check out our cool merch 👇🏻
https://epilepsy-sparks.creator-spring.com
🎧 Listen to the podcast 👇🏻
https://epilepsysparksinsights.podbean.com
📖 Chapters
00:00 Intro
14:30 Understanding Developmental and Epileptic Encephalopathies
17:57 Future of Seizure Tracking Technology
21:01 Collaboration Between Clinicians and Engineers
23:52 The Broader Impact of Epilepsy Beyond Seizures
00:00 Conclusion & Thanks
🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
📲 Join us on social media!
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LinkedIn https://www.linkedin.com/company/epilepsy-sparks
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In this first half of our chat with Dr. Ewan Nurse, we explore why seizure reporting matters so much in epilepsy care. From forgotten focal seizures to the challenges of eyewitness accounts, Ewan explains why accurate seizure diaries are vital yet so difficult to achieve. We discuss research findings showing that most minor seizures go unreported(!), why some go over-reported(!), the role of memory, stigma, and psychology in diary-keeping, and the importance of involving carers in the process.
🌐 More about Ewan👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/ewan-nurse-seizure-diaries-silent-witness
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
👕 Check out our cool merch 👇🏻
https://epilepsy-sparks.creator-spring.com
🎧 Watch on YouTube to the podcast 👇🏻
https://youtu.be/rP7sTgSSiik
📖 Chapters 00:00
Intro – How reliable are seizure diaries really?
01:09 Meet Dr. Ewan Nurse - Engineer & epilepsy researcher from Melbourne
02:05 Why seizure reporting is fundamental for diagnosis & treatment
03:46 Landmark study: only 1 in 3 seizures recorded during video EEG
04:55 Overreporting - when non-seizure events make it into diaries
07:37 Why subtle seizures are the hardest to track
09:28 Psychology, identity & why some people don’t record their seizures
10:12 The role of witnesses in reporting & why so many seizures are missed
11:26 Cool paper on the topic “The Silent Witness, the unseen gaps in eyewitness recognition of seizures"
13:50 Education, collaboration & improving seizure reporting for better care
14:10 Closing thoughts + what’s coming in Part 2
🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
📲 Join us on social media!
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LinkedIn https://www.linkedin.com/company/epilepsy-sparks
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In this second episode with Dr Phillip Pearl, we explore the human side of rare epilepsies: what drives him as a paediatric neurologist, how advocacy transforms progress, and why research in ultra-rare conditions can change the lives of people with common disorders. We also tackle difficult but vital topics - SUDEP, depression, and suicide in epilepsy - and end on a hopeful note with music and the brain!
🌐 More about Phillip 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/phillip-pearl-rare-epilepsies-sudep-neurology-journey
👕 Check out our cool merch 👇🏻
https://epilepsy-sparks.creator-spring.com
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
🎧 Watch the chat on YouTube 👇🏻
https://youtu.be/scBYPashBAs
📖 Chapters
00:00 – Intro
00:56 – Meet Dr Phillip Pearl
01:17 – What keeps you going, as a paediatric neurologist
03:19 – Choosing paediatric neurology
05:06 – Falling in love with neurology
06:25 – Future of metabolic epilepsies
07:30 – Gene therapy breakthroughs
09:44 – SUDEP & risk awareness
11:18 – Depression, mortality, & suicide in epilepsy
11:55 – The intersection of music and epilepsy
12:28 – Conclusion & thanks
🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
📲 Join us on social media!
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LinkedIn https://www.linkedin.com/company/epilepsy-sparks
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Neurologist Dr Phillip Pearl (Boston Children’s Hospital / Harvard Medical School), joins Torie to explore inherited metabolic epilepsies. He explains why include far more than seizures, shares powerful stories (including vitamin B6-responsive epilepsy), and traces the progress from mid-20th century discoveries to today’s targeted therapies - including research into gene therapy!
👕 Check out our cool merch 👇🏻
https://epilepsy-sparks.creator-spring.com
🌐 More about Phillip 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/phillip-pearl-inherited-metabolic-epilepsies-gene-therapy
🌐 More Epilepsy Sparks Insights
👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights
🎧 Watch the video 👇🏻
https://youtu.be/yJ31k_6xNNg
📖 Chapters
00:00 Intro
00:00 Meet Philip
02:52 Understanding Inherited Metabolic Epilepsies
06:08 The Role of Genetics in Epilepsy
08:58 Transformational Treatments in Epilepsy
12:05 The Future of Epilepsy Treatment
00:00 Conclusion & Thanks
🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
📲 Join us on social media!
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LinkedIn https://www.linkedin.com/company/epilepsy-sparks
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Bluesky https://bsky.app/profile/epilepsysparks.bsky.social
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Asst. Prof. Simona Balestrini, an adult and paediatric neurologist, shares her epilepsy research into the use of transcranial magnetic stimulation (TMS) as a tool for understanding genetic forms of epilepsy! She explains the methodology of TMS, its applications in clinical and research settings, and the importance of safety in its use for people with an epilepsy. The chat also explores future directions for TMS, including its potential as a treatment option!
📖 Chapters
00:00 Intro
00:22 Meet Simona Balestrini
02:20 What Transcranial Magnetic Stimulation Actually Is
03:47 How Simona Uses TMS in Epilepsy Research
05:56 What TMS Reveals About Genetic Epilepsies
09:50 Why Safety Matters in Magnetic Brain Stimulation
12:09 Could TMS Guide or Improve Treatment?
14:31 Looking Ahead: The Future of TMS in Epilepsy
14:57 Closing Thanks & Where to Learn More
🎞️ Watch on YouTube 👇🏻
https://youtu.be/hyLxVtc6ud8
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
🌐 More about Simona 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/simona-balestrini-transcranial-magnetic-stimulation
👕 Check out our cool merch 👇🏻
https://epilepsy-sparks.creator-spring.com
🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
📲 Join us on social media!
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LinkedIn https://www.linkedin.com/company/epilepsy-sparks
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Bluesky https://bsky.app/profile/epilepsysparks.bsky.social
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Instagram https://www.instagram.com/epilepsysparks
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Facebook https://www.facebook.com/epilepsysparks
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TikTok https://www.tiktok.com/@epilepsysparks
An epilepsy specialist neurologist develops an epilepsy! In this fascinating episode, we delve into the extraordinary journey of Dr. Jim Morrow, a retired consultant neurologist who ends up developing the disease himself! Jim shares his unique perspective on the challenges and ironies of navigating life with an epilepsy; from his initial diagnosis of Autoimmune Limbic Encephalitis due to a Voltage-Gated Potassium Channel Antibody, to the impact on his professional and personal life. Tune in also to learn about Jim’s fun, fictional books (with a medical twist) - out now!
🎧 Listen to the podcast 👇🏻
https://epilepsysparksinsights.podbean.com
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
🌐 More about Jim 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/jim-morrow-neurologist-diagnosed-epilepsy-autoimmune-encephalitis
👕 Check out our cool merch 👇🏻
https://epilepsy-sparks.creator-spring.com
📖 Chapters
00:00 Intro
00:00 Meet XXX
00:00 Conclusion & Thanks
🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
📲 Join us on social media!
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LinkedIn https://www.linkedin.com/company/epilepsy-sparks
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Bluesky https://bsky.app/profile/epilepsysparks.bsky.social
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Paediatric Neurologist Dr Yanin Rivera shares how cultural beliefs, limited access to healthcare, education, and innovative telemedicine solutions are shaping the landscape of epilepsy treatment, care, and prevention in Mexico!
🎧 Listen on all platforms 👇🏻
https://www.youtube.com/@EpilepsySparksInsights
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
🌐 More about Yanin 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/yanin-rivera-mexico-lmic-culture-telemedicine
👕 Check out our cool merch 👇🏻
https://epilepsy-sparks.creator-spring.com
📖 Chapters
00:00 Intro
00:00 Meet Brad & Lucas
00:00 Conclusion & Thanks
🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
📲 Join us on social media!
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LinkedIn https://www.linkedin.com/company/epilepsy-sparks
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Bluesky https://bsky.app/profile/epilepsysparks.bsky.social
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Instagram https://www.instagram.com/epilepsysparks
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Facebook https://www.facebook.com/epilepsysparks
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TikTok https://www.tiktok.com/@epilepsysparks
Sexual health in epilepsy is vital - but many clinicians and patients hesitate to address it. 💜
Epileptologists Dr. Brad Kamitaki and Dr. Lucas Orellana join Torie Robinson for a warm, giggly, and open conversation on:
- Why clinician confidence matters in sexual health discussions
- Cultural barriers that can silence important conversations
- Creating safe spaces for patients
- What’s coming up at the IBE Lisbon 2025 conference!
🎧 Listen now to break barriers with us - and maybe share a laugh along the way.
🎧 Listen on all platforms 👇🏻
https://www.youtube.com/@EpilepsySparksInsights
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
🌐 More about Brad & Lucas 👇🏻
www.torierobinson.com/epilepsy-sparks-insights/brad-katmitaki-lucas-orellana-sexual-health-epilepsy-clinician-patient-confidence
🌐 More about the conference 👇🏻
https://www.ilae.org/congresses/36th-international-epilepsy-congress/section/sectionid/1
👕 Check out our cool merch 👇🏻
https://epilepsy-sparks.creator-spring.com
📖 Chapters
-
Intro
-
Meet Brad & Lucas
-
Challenges in Discussing Sexual Health
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Patient Perspectives on Sexual Health
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Cultural Influences on Conversations about Sex
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Experiences in Discussing Sexual Health with Patients
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Evolving Medical Education and Open-Mindedness
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Interactive Learning and Role Play at the Conference
-
Conclusion & Thanks
🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
📲 Join us on social media!
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LinkedIn https://www.linkedin.com/company/epilepsy-sparks
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Bluesky https://bsky.app/profile/epilepsysparks.bsky.social
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Instagram https://www.instagram.com/epilepsysparks
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Facebook https://www.facebook.com/epilepsysparks
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TikTok https://www.tiktok.com/@epilepsysparks
Milena Gandy (Clinical Psychologist) and Heidi Munger Clary (Epileptologist) chat with Torie about the intersection of epilepsy and suicide, emphasising the importance of welcoming talking about addressing mental health issues in patients with an epilepsy. They go into the stigma surrounding suicidal thoughts, the need for open conversations between patients and clinicians, and strategies for improving patient care and quality of life. The chat also highlights the upcoming, fun(!) IEC workshop in Lisbon, aimed at enhancing patient-centered communication in epilepsy care.
Suicide crisis lines 👇🏻
https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines
🔗 Website & more about Milena Gandy & Heidi Munger Clary 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/milena-gandy-heidi-munger-clary-su!c&&&de-lisbon-iec-2025
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary 👇🏻 https://www.epilepsysparks.com/glossary
📲 Join us on social media!
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LinkedIn https://www.linkedin.com/company/epilepsy-sparks
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Neurologist Dr Parthvi Ravat shares the relationship between epilepsy and Non-Epileptic Events* (also known as dissociative Seizures and PNES), symptoms of the latter, treatment options, and the importance of research and awareness in improving patient outcomes. Parthvi highlights the complexities of diagnosing and managing FND and Dissociative Seizures/PNES/Non-Epileptic Events, the need for a multidisciplinary approach, and the shared experiences of patients experiencing both an epilepsy and NEEs!
*A type of Functional Neurological Disorder (FND)
🔗 Website & more about Parthvi: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/parthvi-ravat-fnd-functional-neurological-disorder
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
📲 Join us on social media!
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Adult neurologist and epileptologist Lucas Orellana shares the intriguing connection between migraine and epilepsy! These seemingly distinct neurological conditions share common pathogenic mechanisms, genetics, and treatments and while they are often experienced together there may be challenges in distinguishing between them. Lucas emphasises the importance of personalised treatment plans and the role of lifestyle factors and stress as common triggers.
🔗 Website & more about Lucas: 👇🏻
http://torierobinson.com/epilepsy-sparks-insights/lucas-orellana-migraine
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
📲 Join us on social media!
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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!
🔗 Safesteps platform 👇🏻
https://sites.google.com/site/danielgoldenholz/Home/safesteps-platform
🔗 Website & more about Daniel 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/daniel-goldenholz-safesteps
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
📲 Join us on social media!
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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.
🔗 Website & more about Jenny: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/jenny-edwards-flaccid-dry-disinterested
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
📲 Join us on social media!
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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.
🔗 Website & more about Jenny: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
📲 Join us on social media!
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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.
🔗 Website & more about Patty and Ludivine: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/patty-shafer-ludivine-rohrer-iec-2025-lisbon-epilepsy-nursing-section
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
🔗 Register for the Nursing Symposium 👇🏻
https://www.ilae.org/congresses/36th-international-epilepsy-congress/section/sectionid/1
📲 Join us on social media!
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LinkedIn https://www.linkedin.com/company/epilepsy-sparks
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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.
🔗 Website & more about Patty & Ludivine: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/patty-ludivine-ludivine-rohrer-being-epilepsy-nurse
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
📲 Join us on social media!
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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.
🔗 Link to study - take part! 👇🏻
www.surveymonkey.com/r/epilepsytalk
🔗 Website & more about Kaley Marcinski Nascimento: 👇🏻
www.torierobinson.com/epilepsy-sparks-insights/kaley-marcinski-nascimento-consciousness
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
www.epilepsysparks.com/glossary
📲 Join us on social media!
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LinkedIn https://www.linkedin.com/company/epilepsy-sparks
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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!
🔗 Website & more about Deborah: 👇🏻
https://torierobinson.com/epilepsy-sparks-insights/deborah-kurrasch-zebra-fish-dee-pharma
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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.
🔗 Website & more about Naluca: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/naluca-beckford-epilepsy-awareness-zambia
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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!
🔗 Website & more about Helen: 👇🏻
https://torierobinson.com/epilepsy-sparks-insights/helen-scharfman-mossy-cells-international-research
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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.
🔗 Website & more about Zarine: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/zarine-mogal-epilepsy-pakistan-stigma-treatment-gap
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Psychiatrist Andrea Cipriani discusses his work in clinical psychiatry and research, focusing on mood disorders and the importance of personalised treatment! He highlights the GALENOS project, which aims to synthesise existing data to improve mental health outcomes, and chats about the need for a shift from a medication-centered approach to one that prioritises quality of life and community care. Andrea also advocates for collaboration between clinicians and community support systems to enhance patient care and reduce the stigma surrounding mental health treatment.
🔗 Website & more about Andrea: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/andrea-cipriani-galenos-mental–health-research-outcomes-psychiatry
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Sometimes people with an epilepsy take their own lives - and this is more common that many realise. Psychiatrist & researcher Prof. Andrea Cipriani joins Torie to talk of the psychiatric symptoms of the epilepsies, including depression, anxiety, psychosis, and even suicide; expressing the need for joined-up care between neurology and psychiatry, and why lived experience must shape treatment, management, and where possible; prevention. It’s a powerful call for holistic, person-centred support!
🔗 Website & more about Andrea: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/andrea-cipriani-suicide-lived-experience-biopsychosocial-model-care
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Genetic epilepsies are way more complex than we thought!! Clinical neurologist and physician-scientist Prof. Sam Berkovic chats with Torie all about the differences between inherited, de novo, and somatic forms, challenges in diagnoses, impacts on families, and societal stigma. However, Sam also shares the exciting, positive advancements in genetic research, how understandings have far, far improved over the past few years, and how cool, effective international collaboration in research has led to and shall lead to further advancements in precision medicine!
🔗 Website & more about Sam: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/sam-berkovic-genetic-epilepsy-developments
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Torie chats with neurologist Sanja Gluscevic about SUDEP (Sudden Unexpected Death in Epilepsy) - a critical, often avoided topic! Sanja provides statistics and how to minimise risk factors. Sanja emphasises the need for effective communication between clinician and patient and/or caregiver, plus highlights holistic approaches to minimising SUDEP risk, including managing mood and sleep, and the importance of adherence to medication!
🔗 Website & more about Sanja: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/sanja-gluscevic-minimising-sudep-risk
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Neuropsychologist Prof. Gus Baker discusses clinical neuropsychology in relation to epilepsy! He highlights the significant morbidities associated with epilepsy, such as depression and anxiety, and really emphasises the importance of understanding the mental health aspects of epilepsy. Gus and Torie also chat about the role of clinicians in addressing these comorbidities and the need for PWE education and empowerment to improve quality of life!
🔗 Website & more about Gus: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/gus-baker-neuropsychology-anxiety-depression-psychosis
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Epileptologist Prof. Graeme Jackson talks about the cool Australian Epilepsy Project - including the integration of advanced technology, including MRI and AI to improve patient outcomes and quality of life! The project aims to transform the traditional approach to epilepsy treatment by utilising telehealth and data analysis to provide personalised care. Graeme emphasises the importance of addressing mental health alongside seizure control and expresses aspirations for the project's global impact!
🔗 Website & more about Graeme 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/graeme-jackson-australian-epilepsy-project-mri
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Paediatric neurologist Matthias De Wachter chats about the benefits of a holistic approach to helping people affected by the epilepsies, emphasising the importance of understanding the broader implications of the disease - with symptoms other than seizures. Matthias shares with us his research into KCNQ2 & 3, his insights into the significance of lifestyle factors in managing epilepsy, the transition from paediatric to adult care, ongoing research for precision medicine, and drug repurposing for rare genetic epilepsies!
🔗 Website & more about Matthias 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/matthias-de-wachter-morbidities-kcnq2-kcnq3-dravet
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Dr. Bindu Menon discusses her work as a neurologist in India; focusing on epilepsy and stroke awareness. She highlights the significant prevalence of these conditions in India, particularly in rural areas, and the challenges faced in treatment and education. Bindu emphasises the importance of empowering women and the role of technology, such as the Epilepsy Help App, in improving patient care and adherence to medication.
🔗 Website & more about Bindu 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/bindu-menon-epilepsy-empowerment-india
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Dr. Simona Giorgi from Dravet Syndrome Foundation Spain shares their preclinical and clinical studies, epidemiological research, and their development of tools to support caregivers and people affected by Dravet! Highlighted are the needs for greater awareness among healthcare professionals about the capabilities of patient advocacy groups and the invaluable psychological support they can provide to families.
🔗 European Dravet Syndrome Conference 2025
https://www.epilepsysparks.com/conferences/european-dravet-syndrome-conference-madrid
🔗 Website & more about Simona: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/simona-giorgi-dance-dravet-epidemiology-support
Chapters 📖
00:00 Intro
00:00 Meet Simona & Dravet Syndrome Foundation Spain
02:48 Research Initiatives and Collaborations
06:07 Understanding Epidemiological Studies
08:58 Tools for Caregivers and Patients
11:57 Awareness and Support for Families
15:04 Future Directions
00:00 Conclusion & Thanks
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rareepilepsy #Dravet #epidemiology #neuropsychiatric #carer #caregiver
Tom Jenson, a postdoc researcher at UCL Institute of Neurology, chats about his research on astrocytes and their role in neuronal communication. He explains the differences between astrocytes and neurons, the challenges of using human brain tissue for research, and shares preliminary results from his studies on calcium signaling in astrocytes! The conversation also touches on the creative aspects of scientific research and the beauty of visualising brain cells through microscopy.
🔗 Website & more about Tom: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/tom-jensen-astrocytes-neurons-epilepsy-neuroscience
Adults with an intellectual disability and an epilepsy have many of the same needs as those without the former - but things can take longer to figure out - hence, care and patience are crucial from clinicians! Neuropsychiatrist Mike Kerr shares how what to many may seem like small gains can have huge, positive impacts on the Quality of Life of people with an ID and an epilepsy. This is part 2 of 2 with Mike.
🔗 Website & more about Mike 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/mike-kerr-intellectual-disability-epilepsy-communications-health
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Neuropsychiatrist Mike Kerr talks about the intersection of epilepsy and Intellectual Disability, the complexities of communication, the need for tailored communication strategies, the needs of individuals and caregivers, and the importance of building relationships in healthcare! Mike and Torie also touch on new treatments and the overall quality of life for the people affected.
🔗 Website & more about Mike 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/mike-kerr-intellectual-disability-epilepsy-community
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Tobias Engel talks about potentially preventing seizures and epilepsy caused by Traumatic Brain Injury (TBI)! He discusses his study into the P2X7 receptor's role in TBI and its potential to reduce inflammation, seizures, epilepsy, neurodegeneration, and mood disorders. Tobias also speaks of the potential for improved quality of life for those with TBI-related epilepsy in the future.
🔗 Website & more about Tobias: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/tobias-engel-p2x7-receptor-tbi-epilepsy
______________
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Post-doc researcher Mastaneh Torkamani-Azar discusses her research on drug-resistant epilepsy, focusing on the innovative techniques being developed to improve diagnosis and treatment. The conversation covers the challenges of drug resistance in epilepsy, the importance of advanced neuroimaging and histopathology, and the potential impact of this research on patient outcomes and quality of life. Mastaneh emphasises the collaborative nature of the project and the significance of integrating various data types to enhance clinical decision-making.
🔗 Website & more about Mastaneh: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/mastaneh-torkamani-azar-data-epilepsy-making-diagnoses-more-precise
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Neurobiologist Leszek Kaczmarek discusses his extensive research in molecular neurobiology, particularly focusing on the role of the MMP-9 protein in learning, memory, and epilepsy! He explains how MMP-9 is linked to synaptic plasticity and epilepsy, autism, and various mental health disorders, including depression, schizophrenia, and alcohol addiction. Kaczmarek also shares insights into future research directions and the potential for drug development to prevent epilepsy.
🔗 Website & more about Leszek : 👇🏻
www.torierobinson.com/epilepsy-sparks-insights/leszek-kaczmarek-brain-mind-connection
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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
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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..
🔗 Website & more about Glenn 👇🏻
www.torierobinson.com/epilepsy-sparks-insights/glenn-king-treating-epilepsy-with-spider-venom
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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!
🔗 Website & more about Eleni 👇
https://www.torierobinson.com/epilepsy-sparks-insights/eleni-panagiotakaki-ahc-grin-genetic
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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.
Website, transcript, & more about Clio: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/clio-rubinos-acute-symptomatic-seizures
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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!
🔗 Website & more about Zelekha 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/zelekha-seedat-opm-meg-young-epilepsy
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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!
🔗 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
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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.
🔗 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
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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!
🔗 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
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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
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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 📖
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Intro to Eduardo
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The Value of Genetic Testing in Epilepsy
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Diversity and Representation in Genetic Research
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Understanding Developmental Epileptic Encephalopathies (DEEs)
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Contributing to Epilepsy Research
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Latin American Congress on Epileptsy Genetics
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Conclusion & thanks
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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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
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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
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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
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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
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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
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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
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epilepsy #mrna #genetics #geneticepilepsy #DavidHenshall
David Henshall discusses the role and importance the role of microRNAs in epilepsy; which act as master regulators of gene activity and help stabilise the gene pathway. He discusses the potential of RNA therapy in treating epilepsy and the challenges of delivering RNA molecules to the brain. Henshall's book, 'Fine Tuning Life: A Guide to MicroRNAs, Your Genome's Master Regulators,' explores the fascinating world of microRNAs and their impact on gene regulation.
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-fighting-epilepsy-with-micrornas
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
https://www.epilepsysparks.com/glossary
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epilepsy #mrna #genetics #geneticepilepsy #DavidHenshall
Epileptologist Eddie Chengo from Kenya discusses the stigma faced by people affected by epilepsy in Africa, explaining that around 75% of people with epilepsy in the region experience stigma and emphasising the importance of addressing this whilst implementing medical treatment. Eddie also shares the various initiatives and research projects his organisation is undertaking to raise awareness and challenge the stigma associated with epilepsy.
🔗 Eddie's papers 👇
https://www.researchgate.net/scientific-contributions/Eddie-Chengo-44151310
🔗 Website & more about Eddie 👇
https://www.torierobinson.com/epilepsy-sparks-insights/eddie-chengo-epilepsy-stigma-kenya
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇 https://www.epilepsysparks.com/glossary
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epilepsy #neurology #stigma #discrimination
A mutation of a gene can lead to lack of absorption of glucose (our fuel) and cause epilepsy! Carla Marini, a paediatric neurologist and neuropsychiatrist tells us all about the rare epilepsy and metabolic disorder GLUT1 Deficiency Syndrome, emphasising the importance of early diagnosis, treatment using the ketogenic diet (which can help control seizures, improve cognitive function, and decrease the impacts of movement disorders). She also highlights the value of working closely with patient and family groups to understand the clinical manifestations and natural history of the disease. Carla shares an uplifting success story of a patient who has thrived with early intervention.
Papers mentioned 👇
- “Glucose Transporter 1 Deficiency as a Treatable Cause of Myoclonic Astatic Epilepsy”:
https://jamanetwork.com/journals/jamaneurology/fullarticle/1107863
- “Early onset absence epilepsy due to mutations in the glucose transporter GLUT1”:
https://www.researchgate.net/publication/26864996_Early_onset_absence_epilepsy_due_to_mutations_in_the_glucose_transporter_GLUT1
🔗 Website & more about Carla 👇
https://www.torierobinson.com/epilepsy-sparks-insights/carla-marini-glut1-disorder-metabolism-genetic
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇 https://www.epilepsysparks.com/glossary
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Neuroscientist Nazanin Azarinejad Mohammadi discusses her research on epilepsy genetics, the clinical and functional characterisation of GABAA-receptor related disorders, and how mutations in the GABAA-receptor subunits can lead to epilepsy and morbidities. Nazanin also highlights the variability in symptoms among individuals with the same mutation and the need for further research to understand the factors that contribute to this variability. Plus, emphasised is the importance of genetic testing and personalised treatment for patients with these mutations.
Paper: “Clinical and functional characterization of GABAA-receptor related disorders: translating genetic diagnostics into personalized treatment” 👇
https://portal.findresearcher.sdu.dk/en/publications/clinical-and-functional-characterization-of-gabaa-receptor-relate
🔗 Website & more about Nazanin 👇
https://www.torierobinson.com/epilepsy-sparks-insights/nazanin-azarinejad-mohammadi-genetic-testing-personalised-treatment-GABA-receptors
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇 https://www.epilepsysparks.com/glossary
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As well as preventing up to 100% of seizures in 20% of those with refractory focal epilepsy, Cenobamate may also (indirectly), positively impact mental health, cognitive function and reduce seizure propagation. Ricardo Morcos shares information on the titration of Cenobamate, how it is not suitable during pregnancy, and the importance of a 1:1 clinician-patient relationship. This is part 2 of 2.
Please note that this is not an endorsement of any particular anti-seizure medication (Cenobamate or any of the others mentioned) and any questions or ideas from a patient or carer must be brought up with one’s neurologist/epileptologist.
Spanish consensus on the management of concomitant anti-seizure medications when using Cenobamate in adults with drug-resistant focal seizures 👇
https://www.researchgate.net/publication/379572148_Spanish_consensus_on_the_management_of_concomitant_antiseizure_medications_when_using_cenobamate_in_adults_with_drug-resistant_focal_seizures
🔗 Website & more about Ricardo 👇
https://www.torierobinson.com/epilepsy-sparks-insights/ricardo-mocos-starting-cenobamate-cognition-pregnancy
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇 https://www.epilepsysparks.com/glossary
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As well as preventing up to 100% of seizures in 20% of those with refractory focal epilepsy, Cenobamate may also (indirectly), positively impact mental health, cognitive function and reduce seizure propagation. Ricardo Morcos shares information on the titration of Cenobamate, pregnancy, and the importance of a 1:1 clinician-patient relationship. This is part 2 of 2.
Please note that this is not an endorsement of any particular anti-seizure medication (Cenobamate or any of the others mentioned) and any questions or ideas from a patient or carer must be brought up with one’s neurologist/epileptologist.
Spanish consensus on the management of concomitant anti-seizure medications when using Cenobamate in adults with drug-resistant focal seizures
https://www.researchgate.net/publication/379572148_Spanish_consensus_on_the_management_of_concomitant_antiseizure_medications_when_using_cenobamate_in_adults_with_drug-resistant_focal_seizures
🔗 Website & more about Ricardo 👇
https://www.torierobinson.com/epilepsy-sparks-insights/ricardo-mocos-cenobamate-game-changer-for-epilepsy
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇 https://www.epilepsysparks.com/glossary
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cenobamate #focalepilepsy #partialseizures #epilepsy #RicardoMocos
For the 11th World Brain Day, hear from co-chair and lead neurologist Tissa Wijeratne, who explains how so many of the brain disorders in nearly 4 billion people can be prevented, and how you can help this happen! Links to the free World Brain Day webinar, and more, are below.
🎧 Listen to ESI on Spotify!👇
https://open.spotify.com/show/14rwL06qUowezZQGwpR7GW?si=dE4AEAsrQhqbeDc8dKM-dQ
Also on Apple Podcasts or anywhere else you listen!
World Brain Day 👇
https://wfneurology.org/activities/news-events/wfn-news/2024-05-07-wfn-wbd
World Brain Day webinar 👇
https://us02web.zoom.us/webinar/register/WN_ayYclSOLRSKwriPFg7S5bg#/registration
World Brain Day content toolkit 👇
https://drive.google.com/drive/folders/1TD_CyerWAa_x65614G6UmWJ8WUBocGNz
World Health Organization Intersectoral Global Action Plan 👇
https://www.who.int/publications/i/item/9789240096356
🔗 Website & more about Tissa 👇
https://www.torierobinson.com/epilepsy-sparks-insights/tissa-wijeratne-world-brain-day-2024
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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WorldBrainDay #WBD2024 #BrainHealthandPrevention #TissaWijeratne
People forget to bring up memory issues with their neurologist…because of their memory issues! Discover the potentials and limitations of neurosurgery and neuroplasticity with epileptologist Jon Kleen from UCSF medical Center.
🔗 Website & more about Jon: 👇
https://www.torierobinson.com/epilepsy-sparks-insights/jon-kleen-epilepsy-surgery-neuroplasticity-memory-cognition
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇 https://www.epilepsysparks.com/glossary
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cognition #memory #epilepsy #jonkleen
Learn all about how people can have memory and other cognitive struggles as part of their epilepsy - in part 1 of 2 with epileptologist Jon Kleen from the UCSF Medical Center, USA! Jon speaks about his career focus, types of cognitive impairments, impacts on quality of life, and more.
🔗 Website & more about Jon: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/jon-kleen-cognitive-impairments-epilepsy-research
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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cognition #memory #epilepsy #jonkleen
Stress and anxiety levels are incredibly high amongst the population of those with an epilepsy and are commonly seizure triggers. Neil Shah of the Stress Management Society speaks of stress in today's society, the importance of recognising and addressing it, removing the guilt, shame, and stigma associated with it, and the power we have to limit it.
🔗 Website & more about Neil: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/neil-shah-managing-stress-anxiety-with-epilepsy
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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epilepsy #stress #anxiety #sleep #neilshah
Learn of when an Autoimmune-Associated Epilepsy can onset, potential causes, and the needs of people affected - other than seizure control! All in part 2 of 2 with epileptologist Claude Steriade from NYU Langone Health Epilepsy Center.
🔗 Website & more about Claude: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/claude-steriade-other-symptoms-of-autoimmune-associated-epilepsy
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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autoimmune #autoimmuneepilepsy #neurology #immunology
Hear about Autoimmune-Associated Epilepsy and the intersection between epilepsy and immunology - in part 1 of 2 with epileptologist Claude Steriade from NYU Langone Health Epilepsy Center! Claude explains the causes, mechanisms, and impacts of Autoimmune-Associated Epilepsy upon people's lives, plus, how crucial early diagnoses and intervention are.
🔗 Transcription & more about Claude: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/claude-steriade-autoimmune-associated-epilepsy-immunology
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autoimmune #autoimmuneepilepsy #neurology #immunology
Mark Cook and Torie discuss the significant improvements in epilepsy treatments over the past few decades - thanks to technologies like MRI and genetics. Mark also explores the issue of overreporting and underreporting of seizures by patients and the potential of ambulatory EEG monitoring and big data analysis to provide a more accurate understanding of seizure activity which can lead to both improved treatments and improving peoples’ quality of life.------------------------------------------📖 Transcript & more on Mark: 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights/mark-cook-huge-advances-in-eeg-monitoring-analysis-----------------------------------------Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻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 #medtech #EEG #ambulatoryEEG
Deb Pal and Paul Gringras discuss their research on the links between sleep and seizures in epilepsy; sharing their work on the CASTLE project, which aims to improve sleep and Quality of Life for children, young people, and families affected. They discuss both their app called COSI - which provides evidence-based sleep interventions for parents, and the upcoming CASTLE conference, where they shall disseminate their research findings and discuss the importance of personalised approaches to sleep management in epilepsy.
Interested in attending the conference? 🎫
Contact us via deb.pal@kcl.ac.uk or via our X accounts @palneurolab, @TorieRobinson10, or @EpilepsySparks.
🔗 Website & more about Deb and Paul: 👇🏻
www.torierobinson.com/epilepsy-sparks-insights/deb-pal-paul-gringras-exploring-the-links-between-sleep-epilepsy-castle
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sleep #epilepsy #epilepsyresearch #CASTLE #COZY
What should someone do if interested in adopting the ketogenic diet or looking further into "metabolic psychiatry"? Hear about sacrifices, benefits, weight loss, constipation, nutrition, and having the right support. All in part 3 of 3 with the “pharmacist who gave up drugs”, Graham Phillips.
🔗 Website & more about Graham: 👇🏻
www.torierobinson.com/epilepsy-sparks-insights/graham-phillips-epilepsy-changing-metabolism-stabilise-brain-ketogenic
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epilepsy #keto #ketogenic #metabolichealth #weightloss
Learn of the evolution of the ketogenic diet, metabolic psychiatry, the treatment overlap between different diagnoses (e.g. the epilepsies and mood disorders), recommended reads, and the cognitive dissonance of many regarding the ketogenic diet. This is part 2 of 3 with the Pharmacist Who Gave Up Drugs: Graham Phillips.
🔗 Website & more about Graham: 👇🏻
www.torierobinson.com/epilepsy-sparks-insights/graham-phillips-hunger-mood-epilepsy-metabolism-ketogenic
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epilepsy #keto #ketogenic #metabolichealth #weightloss
_______________
The Pharmacist Who Gave Up Drugs introduces us to the impacts of the western diet on our health, quality of life, life expectancy - and the potential benefits of the ketogenic diet - in part 1 of 3: Graham Phillips.
🔗 Website & more about Graham: 👇🏻
www.torierobinson.com/epilepsy-sparks-insights/graham-phillips-ketogenic-diet-pharmacist-part1
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 www.epilepsysparks.com/glossary
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epilepsy #keto #ketogenic
M. Scott Perry explains how Epilepsy Researchers require intros and support to be the best that they can be and initiate, manage, and see results. It’s possible through the Pediatric Epilepsy Research Consortium (PERC).
🔗 Website & more about Scott: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/m-scott-perry-pediatric-epilepsy-research/consortium
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epilepsy #pediatricepilepsy #scottperry #PERC #epilepsyresearch
Hear about research into a new way of inhibiting temporal lobe seizure activity through GABAergic interneuron cell therapy! With epileptologist and neuroscientist David Spencer.
🔗 Website & more about David: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/david-spencer-preventing-seizures-using-stem-cells
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epilepsy #DavidSpencer #stemcell #interneuron #GABA
It's wild: when clinicians mistake an epilepsy (caused by a brain tumour!) for menopause! Or, when a parent doesn't believe that their daughter could have an epilepsy...! Why aren't organisations and governments promoting epilepsy awareness as well as they do stroke and MS?! Tune in to hear all about it from leading epilepsy specialist: Jacqueline French.
🔗 Website & more about Jacqueline: 👇🏻
jacqueline-french-epilepsy-menopause
🔗 Kin - that Irish TV series: 👇🏻
IMDB
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epilepsy #epilepsyresearch #JacquelineFrench #humanepilepsyproject #EpilepsyStudyConsortium
Hear about the one-of-a-kind 6th Dianalund International Conference on Epilepsy in May 2024 - with lead genetic clinicians and researchers Elena Gardella, Rikke Møller, and Guido Rubboli.
🔗 Website & more about Elena, Rikke, and Guido: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/6th-dianalund-international-conference-epilepsy-genetics-denmark-elena-gardella-rikke-moller-guido-rubboli
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epilepsy #epilepsygenetics #monogenic #phenotypes #filadelfia #danishepilepsycenter #DICE
5% of a cohort* had at least 1 car accident (and up to 3) before their epilepsy diagnosis! Hear about the global Human Epilepsy Project by Jacqueline French and learn how seizures can present in so many different ways!
*450 people
🔗 Website & more about Jacqueline: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/jacqueline-french-human-epilepsy-project
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epilepsy #epilepsyresearch #JacquelineFrench #humanepilepsyproject #EpilepsyStudyConsortium
Do Autism & Intellectual Disability Come With Epilepsy? Learn of the Epilepsy, Autism and Intellectual Disability “triad” - studied by clinician scientist, epileptologist: Vaishnav Krishnan.
🔗 Website & more about Vaishnav: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/vaishnav-krishnan-epilepsy-autism-intellectual-disability-triad
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epilepsy #neurology #autism #intellectualdisability #vaishnavkrishnan
Learn of the huge reduction in seizures amongst adults with the epilepsy Lennox-Gastaut Syndrome - as the result of DBS! With Linda Dalic.
🔗 Website & more about Linda: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/linda-dalic-stimulating-brain-reduce-seizures-neuromodulation
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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epilepsy #LindaDalic #LGS #DBS #Neuro
_______________
Hear about the origins of Purple Day, its purpose, the positivity and how to make a difference! With founder: Cassidy Megan!! We talk about how Purple Day was founded, Cassidy's personal epilepsy diagnosis, school, stigma, the diversities of the epilepsies, SUDEP, varying cultural experiences, media portrayals, credible sources of information, and brilliant clinicians!
🔗 Website & more about Cassidy: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/cassidy-megan-purple-day-openness
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purpleday #epilepsy #cassidymegan
Brain, Skull, And Neck Implants For Epilepsy?! What's the epilepsy treatment called VNS? Or DBS? Or RNS?! Learn about these cool neuromodulation treatments that can help to prevent and/or control epileptic seizures (!) with star epileptologist Anna Bochenek.
🔗 Website & more about Anna: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/anna-bochenek-neuromodulation-vns-dbs-rns
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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epilepsy #neuromodulation #AnnaBochenek
Brain tumours vary greatly and 30% of them cause an epilepsy to develop - hence the name Brain Tumour Related Epilepsy. Hear more for Brain Tumour Awareness Month from cancer neuroscientist: Kate Connor.
🔗 Website & more about Kate: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/kate-connor-epilepsy-brain-tumours-awareness-month
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epilepsy #braintumour #braintumor #braintumourrelatedepilepsy #KateConnor
Surprising and exciting rare epilepsy (STXBP1) research discoveries that have led to the enhancement of excitatory synapses as a proposed treatment - by Jean-François Perrier of the University of Copenhagen, Denmark.
🔗 Website & more about Jean-François: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/jean-francois-perrier-STXBP1-excitatory-inhibitory-synapses
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epilepsy #STXBP1 #Jean-FrançoisPerrier #genetics
Could we accurately predict epileptic seizures using AI? How accurate do predictions need to be? How cool to use do devices need to be?! Could seizure forecasting reduce injuries, decrease mortality, and improve people’s quality of life? Hear all about it from neurologist: Daniel Goldenholz.
🔗 Website & more about Daniel: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/daniel-goldenholz-seizure-forecasting-artificial-intelligence
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epilepsy #medtech #danielgoldenholz
How useful is and can AI be in helping people with an epilepsy? How safe it it? What are the biases to be challenged and the ethics to be followed? Hear answers from Daniel Goldenholz of Harvard Beth Israel Deaconess Medical Center.
🔗 Website & more about Daniel: 👇🏻
www.torierobinson.com/epilepsy-sparks-insights/daniel-goldenholz-ai-safety-ethics-biases
Chapters 📖
00:00 Clip & intro
00:59 Meet Daniel
01:30 AI is fun and important for epilepsy
02:33 Using AI usefully and safely
05:12 Ethics and AI biased training
07:40 Tricking AI using AI tricks
08:32 Explainable AI controversy
10:40 AI intro pace in healthcare: benefiting and protecting humans
13:30 Epilepsy industry is full of data
14:02 When people don't want to wait
16:03 Not all epilepsy apps are proven to work
17:22 Thank you Daniel
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 www.epilepsysparks.com/glossary
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epilepsy #medtech #danielgoldenholz #aibias #medicalai
“Epilepsy is not only a disease, epilepsy is a symptom of a brain disease. And brain health is everything, belongs to everybody!” Learn more of from and hear of the exciting, upcoming Kuopio Epilepsy Symposium in March 2024 - with exciting lead neurologist, researcher, and world-changer: Reeta Kälviäinen.
🔗 Website & more about Reetta: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/reetta-kalviainen-genetic-rare-epilepsy-symptom-symposium
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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epilepsy #padaczka #ReettaKälviäinen
Hear all about International Epilepsy Day, the needs of those affected by the epilepsies, eradicating stigma, treating and preventing epilepsy, and hope for the future; all with global lead Helen Cross.
🔗 Website & more about Helen: 👇🏻
- https://www.torierobinson.com/epilepsy-sparks-insights/helen-cross-international-epilepsy-day
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epilepsy #InternationalEpilepsyDay #HelenCross #GreatOrmondStreet
For Children's Mental Health Week meet Kirsten McHale who shares the complex needs of many children with an epilepsy, how their needs are not being met (in the UK), and how services must be improved.
🔗 Website & more about Kirsten: 👇🏻
www.torierobinson.com/epilepsy-sparks-insights/kirsten-mchale-real-needs-children-with-epilepsy
Children's Mental Health Week:
www.childrensmentalhealthweek.org.uk
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
https://www.epilepsysparks.com/glossary
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epilepsy #epilepsynurse #youngepilepsy #childrensmentalhealthweek
Why are only a small percentage who’d benefit from epilepsy surgery getting it? Hear from neurosurgeon Luke Tomycz of the Epilepsy Institute of New Jersey.
🔗 Website, transcription, and more about Luke: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/luke-tomycz-why-arent-more-people-having-epilepsy-surgery
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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epilepsy #LukeTomycz #epilepsysurgery #neurosurgery
Hear about ways of measuring epilepsy surgery success, risks, and managing expectations. With neurosurgeon Luke Tomycz.
🔗 Website, transcript, and more about Luke: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/luke-tomycz-epilepsy-surgery-success-measurement-engel-class
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epilepsy #LukeTomycz #epilepsysurgery #neurosurgery
5v102IYOXYSvK83CKKU2
Learn about epilepsy surgery and potential benefits and risks - from epilepsy neurosurgeon of the Epilepsy Institute of New Jersey: Luke Tomycz.
🔗 Website, transcription, and more about Luke: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/luke-tomycz-safety-efficacy-epilepsy-surgery
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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epilepsy #LukeTomycz #epilepsysurgery #neurosurgery
Brain tumours commonly cause epilepsy. Learn more about research into this and Brain Tumour-Related Epilepsy, today with Mark Cunningham of Trinity College Dublin.
🔗 Website & more about Mark: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/mark-cunningham-brain-tumours-tumors-epilepsy
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epilepsy #BrainTumours #BrainTumors #MarkCunningham #RCSI
Could the amygdala be responsible for lack of air hunger and SUDEP? Learn about the research from neurosurgeon and researcher Brian Dlouhy.
🔗 Website & more about Brian: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/brian-dloughy-lack-air-hunger-sleep-apnea-amygdala-sudep
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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SUDEP #epilepsy #BrianDlouhy #amygdala #apnea
Epilepsy Specialist Nurses provide a key part of the care package for people with an epilepsy. Hear of the value of flexibility and going above and beyond required, by Neil Williamson.
🔗 Website & more about Neil: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/neil-williamson-being-an-epilepsy-nurse
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epilepsy #NeilWilliamson #epilepsynurse
A compound designed to treat prostate cancer appears to be effective in treating temporal lobe epilepsy in rodents - including the cognitive and psychiatric aspects so commonly accompanying seizures! Hear more from Pablo Casillas-Espinosa!
🔗 Website & more about Pablo: 👇🏻
www.torierobinson.com/epilepsy-sparks-insights/pablo-casillas-espinosa-sodium-selenate-temporal-lobe-epilepsy
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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epilepsy #PabloCasillasEspinosa #temporallobeepilepsy #DiseaseModifyingTherapies #Tau
Hear about developments in seizure forecasting (using AI & machine learning), the benefits to people with epilepsy, trust, and managing expectations. With Clinical Support Scientist at the Mayo Clinic: Ben Brinkmann.
🔗 Transcription & more about Ben: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/ben-brinkmann-machine-learning-ai-forecast-prevent-seizures
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epilepsy #BenBrinkmann #seizureforecasting
Exciting neuroimaging techniques are getting out there to help more and more people become seizure-free. Hear more about the latest from clinical support scientist Ben Brinkmann.
🔗 Website & more about Ben: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/ben-brinkmann-latest-ways-scan-brain-mri-eeg-mag-magnetoencephalography-7tesla-mri
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epilepsy #BenBrinkmann #MEG #EEG #MRI
Magnetoencephalographies - or MEGs - are brain scans with a very high sensitivity and are a distinct complement to EEG and MRI scans in preparation for epilepsy surgery. Hear all about them now from the expert in biosignal analysis: Stefan Rampp.
🔗 Website & more about Stefan: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/stefan-rampp-MRI-magnetoencephalography-benefits-epilepsy-neurosurgery
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Hear how somatic gene mutations can lead to an epilepsy and how this is being researched by lead clinician scientist of the University of Calgary: Karl Martin Klein.
🔗 Website & more about Karl Martin: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/karl-martin-klein-epilepsy-via-somatic-gene-mutations
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Hear how the conflict in Palestine is impacting the thousands people with epilepsy in Palestine - but how support from around the world is making a difference - with our return-guest, epileptologist Omar Danoun د. عمر دنون..
🔗 Website & more about Omar: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/omar-danoun-epilepsy-israel-palestine-gaza-crisis
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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Epilepsy Specialist Pharmacist Trudy Thomas explains the incredible value of an Epilepsy Specialist Pharmacist, managing “A wonky stool”, and how and why other non-specialist pharmacists should learn more about the epilepsies.
🔗 Website & more about Trudy: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/trudy-thomas-epilepsy-specialist-pharmacists-value
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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Raising awareness of epilepsy amongst everyone for Epilepsy Awareness Month - through events and just chatting! With epileptologist Meriem Bensalem-Owen.
🔗 Website & more about Meriem: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/meriem-bensalem-owen-epilepsy-awareness-month-being-involved
Chapters 📖
00:00 Meet Meriem
02:27 Why focus on the epilepsies?
03:54 Promoting epilepsy awareness through bourbon!
05:51 Activities for Epilepsy Awareness Month - inc the Mayor of Lexington!
08:37 Help raise awareness during Epilepsy Awareness Month - through the gym…
10:09 Educating researchers and scientists about epilepsy!
12:17 Reassuring people with a new diagnosis of epilepsy
13:24 Telling PWE that heaps of people behind the scene are working for them
15:01 Thank you
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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Learn how funds are generated for the care of children with an epilepsy, fun times, and how it’s crucial to work with the whole family - with peadiatric neurologist and secretary of ILAE YES, Eugenia Roza, Romania.
🔗 Website & more about Eugenia: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/eugenia-roza-epilepsy-fundraising-for-care-romania
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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epilepsy #EugeniaRoza #Seizures #peadiatricepilepsy
Biochemist Matt Gentry shares with us his extensive research into the ultra-rare epilepsy Lafora Disease, his motivation from working with families, the brilliant work of the Lafora Disease charity Chelsea’s Hope, and support from both the NIH and the Chan Zuckerberg Initiative.
🔗 Website & more about Matthew Gentry: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/matthew-gentry-biochemistry-epilepsy-research-lafora-disease
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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Learn about SUDEP (Sudden Unexpected Death in Epilepsy), SUDEP Action Day (18th Oct 2023), minimising risks, and saving lives! With Sammy Ashby of SUDEP Action.
🔗 Website & more about Sammy Ashby: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/sammy-ashby-saving-lives-sudep-action-day
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Exposure to nature: plants, water noises, and more, are proven to be of distinct benefit to human health. Epileptologist, Elisabeth Doran from St. James’s Hospital in Ireland explains the benefits of exposure to nature for those with an epilepsy.
🔗 Website & more about Elisabeth Doran: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/elisabeth-doran-nature-treatment-for-epilepsy
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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Hear of the ultra-rare, devastating, terminal epilepsy Lafora Disease and the research taking place to hopefully improve and save the lives of the children affected, with Berge Minassian.
🔗 Website & more about Berge: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/berge-minassian-lafora-disease
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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Hear of the ultra-rare, devastating, terminal epilepsy Lafora Disease and the exciting research taking place to try and improve and save the lives of the children affected. With global lead researcher Jordi Duran.
🔗 Website & more about Jordi: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/jordi-duran-lafora-disease
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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Hear of the ultra-rare, devastating, terminal epilepsy Lafora Disease and the research taking place to hopefully improve and save the lives of the children affected. With lead epileptologist and researcher José Serratosa of the Hospital Universitario Fundación Jiménez Díaz, Madrid, Spain. This is the first of 3 of our episodes re the ultra-rare genetic epilepsy: Lafora Disease.
🔗 Website & more about José: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/jose-serratosa-lafora-disease
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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Hear of research into complex refractory & super refractory status epilepticus; treatments, outcomes, & how to improve each - with Christoph Beier.
🔗 Website & more about Christoph Beier: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/christoph-beier-status-epilepticus-complexities-outcomes
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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Learn of studies on the accurate prediction of seizure propagation and how identifying this for each person with an epilepsy can assist in more effective treatment - e.g. in presurgical workup, and more - all with biomedical engineer and neuroscientist Christina Maher from the University of Sydney.
🔗 Website & more about Christina Maher: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/christina-maher-seizure-propagation-focal-bilateral-tonic-clonic
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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Signs of focal epilepsy before the seizures start: hear all about it from epileptologist Jacob Pellinen, who shares with us his research and results proving that people can experience things like learning difficulties at school or work before seizure onset.
🔗 Website & more about Jacob: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/jacob-jake-pellinen-focal-epilepsy-starting-later-in-life
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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Did you know that seizures and epilepsy can be part of an autoimmune disorder? E.g. Lupus, Coeliac disease, or Crohn's disease? Hear all about it from neurologist & epilepsy specialist Lucas Gabriel Orellana.
🔗 Website & more about Lucas: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/lucas-gabriel-orellana-epilepsy-systemic-autoimmune-disorders
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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Stigma is to be challenged through education. Gabriela Reyes Valenzuela, a peadiatric epileptologist from Argentina explains her invaluable training regarding epilepsy provided to influential community leaders.
🔗 Website & more about Gabriela: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/Gabriela-Reyes-Valenzuela-epilepsy-stigma-eradicating-latin-america
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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Epileptologist Morten Ingvar Lossius provides recommendations for people with an epilepsy and their clinicians when it comes to appointments, patient sex lives, easing drug side effects, precision medicine, and how crucial regular appointments are. This is part 2 of 2.
🔗 Website & more about Morten: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/morten-lossius-improve-epilepsy-neurology-appointments-improve-quality-of-life
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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Epileptologist Morten Ingvar Lossius shares his crucial work in identifying the psychosocial challenges of individuals with an epilepsy and how best to improve their quality of life. Hear about the Beyond Seizures team at EpiCARE, Juvenile Myoclonic Epilepsy symptoms (other than seizures), and key discoveries made regarding risk. This is part 1 of 2.
🔗 Website & more about Morten: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/morten-lossius-seizures-are-one-symptom-of-epilepsy
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Molecular Neuropathologist & PI Katja Kobow explains her research into unraveling the intricate interplay between epigenetic alterations and the development of epilepsy, specifically in the context of the adult post-mitotic brain.
🔗 Website & more about Katja: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/katja-kobow-brain-tissue-for-epilepsy-research-neuropathology
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Award winning epileptologist Brad Kamitaki explains his research into and the needs of people affected by refractory Idiopathic Generalised Epilepsies.
🔗 Website & more about Brad: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/brad–kamitaki-refractory-idiopathic-generalised-epilepsies
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For World Brain Day, Tissa Wijeratne explains the importance of brain health and disability and how 50% or 4 Billion of us shall be affected personally by neurological disease. Tissa also speaks of how far we’ve come but how much we still need to do to improve both individuals’ lives and the lives of us as a species.
🔗 My website & more about Tissa: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/Tissa-Wijeratne-Epilepsy-On-World-Brain-Day
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
https://www.epilepsysparks.com/glossary
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_______________
Yichen Qiu….
More about Yichen: 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/yichen-qiu-epilepsy-hotel-installing-sprinklers-treat-short-circuit
Chapters 📖 00:00 Intro 02:57 Ion channels 03:40 Why research gene therapy? Why might it be needed? 04:49 Metaphor - the brain is like a hotel 07:08 Firing in space and time 08:15 Temporal lobe epilepsy & the KCNA1 potassium channel gene and increasing seizure threshold RECORD THIS for promo 09:54 Research outcomes/discoveries 11:50 Next stages in research - toxicity, mechanisms, effectiveness 13:56 Conclusion -----------------------------------------
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
👉🏻 T-shirts, mugs, notebooks: https://epilepsy-sparks.creator-spring.com ------------------------------------------
👉🏻 Check out my website: 🔗 https://www.torierobinson.com
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Challenging epilepsy stigma in Cuban-American & Latino communities - with epilepsy specialist neurologist & podcast host Joseph Sirven of Mayo Clinic, Florida. This is part 2 of 2.
More about Joe: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/joe-sirven-epilepsy-stigma-cuban-american-latino-communities-usa
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
👉🏻 T-shirts, mugs, notebooks: https://epilepsy-sparks.creator-spring.com ------------------------------------------
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Pilots and seizures plus older people with epilepsy - all with epilepsy specialist neurologist & podcast host Joseph Sirven of Mayo Clinic, Florida. This is part 1 of 2.
More about Joe: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/joe-sirven-aviation-faa-older-people-independence
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
👉🏻 T-shirts, mugs, notebooks: https://epilepsy-sparks.creator-spring.com ------------------------------------------
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Francesca Furia from the Filadelfia Epilepsy Hospital in Denmark, speaks of her research into sleep disorders amongst people with and families affected by the epilepsies and how to improve sleep quality.
More about Francesca: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/francesca-furia-sleep-disorders-epilepsy
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Epileptologist Álvaro Beltrán Corbellini speaks of what he believes can help to make a good appointment and relationship between a clinician and patient, how epilepsy is “many diseases under one word”, sleep, and his new podcast "EpilepsyUpdate"!
More about Álvaro: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/alvaro-beltra-corbellini-what-makes-good-appointment-with-an-epileptologist
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Epileptologist & neurologist Ángel Aledo-Serrano speaks of the need to improve prescribing and avoid polypharmacy for people with an epilepsy, the need for further qualitative research into treatment and care, and ways to potentially convince clinicians that epilepsy is far more than seizures alone. This is part 2 of 2.
More about Ángel: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/angel-aledo-serrano-improving-asm-prescribing-appointments-qualitative-research-levetiracetam-keppra
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Epileptologist & neurologist Ángel Aledo-Serrano talks of his recent review and opinion on a former paper regarding the anti-seizure medication Levetiracetam/Keppra, its effectiveness in controlling seizures, but also the importance of precision medicine. This is part 1 of 2.
More about Ángel: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/angel-aledo-serrano-reassessing-the-prescription-of-levetiracetam-keppra-for-epilepsy
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With veterinary neurologist Rodrigo Gutierrez-Quintana, hear of his research study into helping treat dogs and humans (hopefully!) with refractory epilepsy! This is episode no. 2 of 2.
More about Rodrigo: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/rodrigo-gutierrez-quintana-helping-dogs-humans-with-epilepsy
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With human molecular physiologist and neuroscientist David Henshall, hear of a MicroRNA treatment for dogs with epilepsy that shall hopefully benefit them and potentially humans in the future. This is episode 1 of 2.
More about David: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/david-henshall-injecting-mirna-helping-dogs-humans-with-epilepsy
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Hear how societal, cultural, and medical attitudes and approaches to the epilepsies have evolved over the past 160 years, significant changes in research, diagnoses, and treatment methods, and how we need to remember to learn from the past! All from neurologist, emeritus prof. and writer, Simon Shorvon.
Simon's book 📖
amazon.co.uk/Idea-Epilepsy-Medical-History-1860-2020/dp/1108842615
More about Simon: 👇🏻
torierobinson.com/epilepsy-sparks-insights/simon-shorvon-the-idea-of-epilepsy
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More about Georgia : 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/georgia-ramantani-sacrifices-benefits-hemispherotomy-brain-surgery-neurosurgery
Chapters 📖
00:00 Intro
00:00 Who makes a good candidate for a hemispherotomy
02:34 Physical effects of surgery - the price for stopping seizures
05:03 Example of patient sacrifice & outcome
07:14 How the surgery works
08:17 Why aren’t there still seizures in one half of the brain?!
11:14 Research into patient outcomes
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More about Georgia : 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/georgia-ramantani-slicing-brain-epilepsy-hemispherotomy-neurosurgery
Chapters 📖
00:00 Intro
01:00 Whole family included in child's healthcare
01:55 Hemispherectomy vs hemispherotomy
03:22 Candidates, results and benefits
05:16 Success measurement
06:45 Who is a candidate for a hemispherotomy?
07:18 Risks of surgery (mortality and morbidity)
10:00 Success measurement of patients after surgery
11:37 Common brain issues prior to surgery
13:15 Life with Half a Brain can be great
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_______________
Learn about epileptogenisis and a study into seizure onset prevention among stroke patients, with Eugen Trinka.
More about Eugen: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/eugen-trinka-epileptogenesis-stroke-seizure-onset-prevention-epilepsy
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Epileptic seizures can look or sound like a mental illness such as anxiety - learn from clinical neuropsychologist and academic Vaughan Bell of UCL, UK, who explains why we need to improve the understanding of the epilepsies among psychologists in general. This is part 2 of 2.
More about Vaughan: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/vaughan-bell-epileptic-seizures-mimicking-psychological-illnesses
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Clinical neuropsychologist and academic Vaughan Bell of UCL, UK, explains why we need to improve the understanding of the epilepsies among psychologists in general. This is part 1 of 2.
More about Vaughan: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/vaughan-bell-changing-psychologists-perceptions-epilepsy
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_______________
Hear about research into the correlation between epilepsy and sleep disorders, with a focus on bruxism (teeth grinding) - with Samson Khachatryan. This is part 2 of 2.
More about Samson: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/samson-khachatryan-sleep-disorders-bruxism-tooth-grinding-epilepsy
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Learn of how politics and war impact populations affected by epilepsy in Armenia - with Samson Khachatryan. This is part 1 of 2.
More about Samson 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/samson-khachatryan-politics-war-impact-people-with-epilepsy
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Peadiatric epileptologist Maša Malenica speaks of her incredible (& replicable!) epilepsy project that empowers patients, families, clinicians, & schools.
More about Maša: 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/masa-malenica-educating-patients-clinicians
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MašaMalenica #epilepsyeducation #purpleday #croatia
What Infantile Epilepsy Syndromes are, potential disease-modifying treatments, steroids, and research - all fabulously explained by epileptologist & neuroscientist Stéphane Auvin!
More about Stéphane: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/stephane-auvin-what-are-infantile-epilepsy-syndromes
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Peadiatric neuropsychiatrist & researcher Rebecca Bromley talks about the needs of families regarding positive research and international collaborations in regards to epilepsy medicine safety, aka pharmacovigilance.
More about Rebecca: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/rebecca-bromley-pharmacovigilance-sodium-valproate
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Hear about common fears of dementia, other causes for dementia "symptoms", how to minimise dementia risk, and more! From adult neurologist & neuroscientist of MGH & Harvard Medical School, Alice Lam. This is part 2 of 2.
More about Alice: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/alice-lam-will-i-get-dementia-epilepsy-alzheimers-risk-minimisation
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_______________
Alice Lam: Lam Lab, Massachusetts General Hospital & Harvard Medical School, US
Alice explains the bidirectional relationship between epilepsy and Alzheimer’s Disease. This is part 1 of 2.
More about Alice: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/alice-lam-epilepsy-dementia-epileptiform-activity-alzheimers-disease
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_______________
Oliver and Torie speak of ways to speak about and improve the sex lives of people with an epilepsy (should they need it) - from both the clinician and patient perspectives.
More about Oliver: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/oliver-henning-sex-epilepsy-02
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In anticipation of Valentine's Day(!), epileptologist & psychiatrist Oliver Henning speaks about the common sexual challenges amongst some people with an epilepsy. Last time we checked, the majority of people with epilepsy were, on paper, sexual creatures, but, indeed, many can struggle with their sex lives - at times - a little more than those without epilepsy. Learn more through an open chat with Oliver. This is part 1 of 2.
More about Oliver: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/oliver-henning-sex-epilepsy-01
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Adult neurologist Abril Marone speaks of her sensitivity in managing the patient experience from paediatric to adult care, plus speaks of how important it is for patients to be able to speak about sensitive, personal concerns; such as sexuality.
More about Abril: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/abril-marone-patient-transition-paediatric-adult-care-sexuality
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_______________
Valentina Galassi Deforie, a final year Ph.D. student of the UCL Neurogenetics Lab, speaks of using frog eggs to research the epilepsies and some new mutations discovered - e.g. those of the KCNA6 and NARS1 genes!
More about Valentina: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/valentina-galassi-deforie-frog-eggs-research-epilepsy-KCNA6-NARS1
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Stéphane Legriel tells us about the ICTALGroup - an organisation formed of neurologists around France who share knowledge to improve the care of people experiencing status epilepticus.
More about Stéphane: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/stephane-legriel-02
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
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We hear from Stéphane Legriel: a Critical Care/ICU physician with a passion for helping people with experiencing status epilepticus - an ongoing, very dangerous, epileptic seizure. Stéphane tells us all about different types of status epilepticus and emergency care for people who experience it.
More about Stéphane: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/stephane-legriel-01
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
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Scott Perry tells us about identifying and challenging racial disparities in epilepsy care, followed by a chat about brain art - an important method of communication when it comes to epilepsy, neuroscience, and more! This is part 2 of 2 with Scott.------------------------------------------More about Scott: 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights/scott-perry-02 ------------------------------------------Book mentioned: "The Maths of Life & Death" - Kit Yates: https://www.amazon.co.uk/Maths-Life-Death-Kit-Yates/dp/1787475425------------------------------------------Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻https://www.epilepsysparks.com/glossary ------------------------------------------Artists mentioned 🎨Dana Simmons: https://www.dana-simmons.comJohn Bramblitt: https://bramblitt.comStephanie Gowdy: Alyrical.com------------------------------------------👉🏻 T-shirts, mugs, notebooks: https://epilepsy-sparks.creator-spring.com------------------------------------------👉🏻 Support us on Patreon for early access to the show: https://www.patreon.com/torierobinson ------------------------------------------📲 Join me on social media!- Twitter: https://twitter.com/torierobinson10- LinkedIn: https://www.linkedin.com/torierobinson- Instagram: https://www.instagram.com/torierobinson10- Facebook: https://www.facebook.com/TorieRobinsonSpeaker- Website: https://www.torierobinson.com
Scott Perry - Head of neurosciences and pediatric epileptologist at Cook Children’s hospital tells us all about genetic testing re the epilepsies, PERC: the Pediatric Epilepsy Research Consortium, and measuring the effectiveness of epilepsy surgeries in children. This is part 1 of 2 with Scott.
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Hear of Richard Baines and his team use fruit flies in epilepsy research, the discoveries made, and the next steps for epilepsy research! Also hear more about the incredible Fly Facility at Manchester University!r University!
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https://www.torierobinson.com/epilepsy-sparks-insights/richard-baines-02
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Hear of HOW Richard Baines and his team use fruit flies in epilepsy research, the discoveries made, and the next steps for epilepsy research! Also hear more about the incredible Fly Facility at Manchester University!
More about Richard: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/richard-baines-01
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
https://www.epilepsysparks.com/glossary
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Post-doc research fellow Eden Robertson from UNSW, Australia, speaks of her GenE Compass project results and how to support caregivers of those with a Developmental & Epileptic Encephalopathy. Eden shares what has already been learnt from the project, the benefits of altruism, and working towards health equity through leaning and working with communities.
More about Eden: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/eden-robertson-02
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Behavioural scientist Eden Robertson from UNSW, Australia, shares with us her work into improving the lives of caregivers of children with a Developmental & Epileptic Encephalopathy, with clear messages: the Developmental & Epileptic Encephalopathies awfully impact caregivers, who must be provided with education and support. This is part one of two with Eden.
More about Eden: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/eden-robertson-01
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Climate change is real. Awfully real. Hear of the real threats posed by climate change to those with epilepsy and what we can do to help make change and minimise risk. With global lead Prof. Sanjay Sisodiya - Consultant Neurologist at UCL Queen Square Institute of Neurology & Neurosurgery, UK.
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https://www.torierobinson.com/epilepsy-sparks-insights/sanjay-m-sisodiya
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
https://www.epilepsysparks.com/glossary
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Hear how graphene technology can access and record abnormal brain activity where EEG electrodes can't! With epilepsy researcher Rob Wykes: from both UCL Hospital for Neurology & Manchester University!
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https://www.torierobinson.com/epilepsy-sparks-insights/rob-wykes
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
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epilepsy #robwykes #neuroscience
Research Specialist Stefanie Prast-Nielsen soeaks of her clinical study involving fecal samples from a group of children with refractory epilepsy who started the ketogenic diet; investigating their gut microbiota and how it may be related to changes in epileptic seizures. Stefanie also talks about future international collaborations in collections of stool samples for furthering this epilepsy research. This is part 2 of 2.
More about Stefanie: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/stefanie-prast-nielsen-02
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
https://www.epilepsysparks.com/glossary
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Hear from Research Specialist & PI Stefanie Prast-Nielsen, from the Centre for Translational Microbiome Research at Karolinska Institutet in Stockholm, Sweden, about her epilepsy research into gut microbiota; explaining to us what they are, how they connect with the brain, and the link between them, our poo/feces, and seizures! This is part 1 of 2.
More about Stefanie: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/stefanie-prast-nielsen-01
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
https://www.epilepsysparks.com/glossary
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This week we chat with Usha Kini: a professor in clinical genetics from Oxford University who tells us about her work on the new, exciting epilepsy genetics pilot project called Genseize. For Genseize they are recruiting individuals and families affected by a primary epilepsy who’d like to potentially find out more about their own condition which may lead to improved treatment, but also improve diagnoses and care for other people - around us now, and in the future.
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👉🏻 Genseize project: https://www.epilepsysparks.com/research-involvement#genseize
👉🏻 More about Usha: https://www.torierobinson.com/epilepsy-sparks-insights/usha-kini
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Adult neurologist, epilepsy specialist, and researcher Heidi Munger Clary specialises in helping people with epilepsy who experience anxiety and depression and who are at risk of suicidality. Heidi tells us about patient risk identification and prevention, access to help, and tools for clinicians and patients. Which are in great demand!! Only watch/listen to this video if it is safe for you to do so - i.e. it is not a trigger for any awful feelings.
If you haven’t listened to episode #01 with Heidi (about her work and research into depression, anxiety, and epilepsy) check it out here: https://epilepsysparksinsights.podbean.com/e/helping-epilepsy-patients-with-anxiety-depression-heidi-munger-clary/?token=86b4e31086fa49381490742d6baab231
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More about Heidi: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/heidi-munga-clary-02
Email: hmungerc@wakehealth.edu
Helplines: 👇🏻
https://www.epilepsysparks.com/mental-health
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
https://www.epilepsysparks.com/glossary
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Anxiety and depression. Each of these mental illnesses are incredibly common as part of epilepsy. In anticipation of World Mental Health Day (10th October), we talk about anxiety and depression as part of epilepsy - with adult epileptologist Heidi Mungar Clary from the Wake Forest University School of Medicine, in North Carolina, US. Heidi tells us about her cool research into the topics (presented at the ILAE in Geneva) and how we can improve the lives of people affected by epilepsy, depression, and anxiety.
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More about Heidi: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/heidi-munger-clary-01
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https://www.epilepsysparks.com/glossary
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Learn how the depression and anxiety of people with epilepsy can be addressed in a unique, remote way by clinical psychologist & senior research fellow Milena Gandy - writer of The Wellbeing Neuro Course.
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More about Milena: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/milena-gandy
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In episode 2 with Phil Tittensor, he shares with us how and why he became an Epilepsy Consultant Nurse and some of his research projects covering risk communication, climate change, and Artificial Intelligence. If you haven’t seen episode #01 with Phil, check it out here: https://epilepsysparksinsights.podbean.com/e/what-is-an-epilepsy-specialist-nurse-phil-tittensor-uk-01
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More about Phil: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/phil-tittensor-02
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Learn about the value of Epilepsy Specialist Nurses - who often do a whole lot more than their title may imply. This week Phil Tittensor, a consultant nurse for the epilepsies, a lecturer for the Uni of Wolverhampton, and the Chair of the Epilepsy Specialist Nurses Association, UK tells us about the variety of huge responsibilities of Epilepsy Nurses, what services they offer, and why we (patients, families, and neurologists) need them.
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More about Phil: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/phil-tittensor
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
https://www.epilepsysparks.com/glossary
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EEGs are not always easy to interpret! Learn how lead peadiatric epileptologist, Asst. Prof. Shilpa Reddy from the Children’s Hospital at Vanderbilt, Tennessee, US trains other clinicians when it comes to EEGs, epilepsy diagnoses, encouraging questions, and reaching out to the public!
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More about Shilpa and her work:
👉🏻 https://www.torierobinson.com/epilepsy-sparks-insights/shilpa-reddy
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https://www.epilepsysparks.com/glossary
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Advanced midwifery practitioner Kim Morley specialises in helping people with epilepsy who want to have children. Kim explains how she has and does positively influence the lives of people affected by epilepsy when it comes to having children (or not!).
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👉🏻 More about Kim: https://www.torierobinson.com/epilepsy-sparks-insights/kim-morley
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Peadiatric neurologist Allan Bayat from the Danish Epilepsy Center speaks of his Ph.D. in genetic epilepsies, his passion for translational medicine for the children and families affected, and future studies into the impact of modified treatments on comorbidities.
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👉🏻 More about Allan: https://www.torierobinson.com/epilepsy-sparks-insights/allan-bayat
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Talking to scientists Moran Rubinstein from Tel Aviv University in Israel and Eric Krema from Universite de Montpellier in France who together work on a project into gene therapy for the rare genetic epilepsy Dravet Syndrome. They speak of their research, its exciting outcomes, and the positive impact that this could have on treatments for patients! If you haven't yet seen the first in this set of two episodes then check it out!
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More about Moran & Eric: 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/moran-rubinstein-eric-kremer-02
Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary
Chapters 📖 00:00 Intro 00:37 How the therapy shall be used 02:16 Therapy for children and adults 03:05 Use in other epilepsies 04:32 Patents and alterations 05:17 Pharma companies 06:11 Safety: the long journey from mice to patients 07:17 Success, editing & retesting the therapy 08:01 Treating the cause rather than the symptoms 08:43 Where and when to inject the virus - an analogy 10:42 Relating as a patient without Dravet 12:02 Next steps with pharma & governments 14:13 Special thanks
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Talking to scientists Moran Rubinstein from Tel Aviv University in Israel and Eric Krema from Universite de Montpellier in France who together work on a project into gene therapy for the rare genetic epilepsy Dravet Syndrome. They speak of their research, its exciting outcomes, and the positive impact that this could have on treatments for patients!
More about Moran & Eric:
https://www.torierobinson.com/epilepsy-sparks-insights/moran-rubinstein-eric-kremer-01
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
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Peadiatric neurophysiologist from Bambino Gesù Children Hospital, Rome, Luca De Palma, explains to us his pre-surgical evaluation of children being considered for epilepsy surgery, the potential risks and benefits of having surgery, and the benefits of having surgery earlier in life.
More about Luca:
https://www.torierobinson.com/epilepsy-sparks-insights/luca-de-silva-01
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
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Peadiatric neurologist & epilepsy surgery specialist from Bambino Gesù Children Hospital, Rome, Luca De Palma, explains to us his pre-surgical evaluation of children being considered for epilepsy surgery, the potential risks and benefits of having surgery, and the benefits of having surgery earlier in life.
More about Luca:
https://www.torierobinson.com/epilepsy-sparks-insights/luca-de-silva-01
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
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Peadiatric neurologist and Assistant Professor at Gazi University, Esra Serdaroglu, tells us about the exciting treatment for some epilepsies called VNS (or vagus nerve stimulation). Esra speaks of the simple surgery, potential side effects, and incredibly positive impacts that so many children experience when it comes to seizure control and even mood. Esra also tells us about her research into the impact of VNS on children when it comes to sleep, appetite, and overall quality of life.
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More about Esra:
https://www.torierobinson.com/epilepsy-sparks-insights/Esra-Serdaroglu
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Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
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Upcoming clinical geneticist Katrine Johannesen - from the Danish Epilepsy Center - explains to us the value of genetic testing for adults with refractory epilepsy. Interview featured on podcast, YouTube, and website. See links below.
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More about Katrine:https://www.torierobinson.com/epilepsy-sparks-insights/katrine-johannesen
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Glossary:**There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
**---
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Who knew that a genetic issue restricting glucose absorption (to the brain) could cause an epilepsy?! Today hear Kathleen Gorman tell us about genetic epilepsies - including the rare genetic epilepsy GLUT1 Deficiency Disorder.
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More about Kathleen:
https://www.torierobinson.com/epilepsy-sparks-insights/kathleen-gorman
---
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
---
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Accurately diagnosing epilepsy can be a challenge. Are the "episodes" NEAD? Fainting? Behavioural issues? Michael Kentris explains to us the importance of and how to obtain a 100% accurate diagnosis, the risks of misdiagnosis, and the "weird questions" to ask patients! Click below for more information about Michael and for podcast contents.
More about Michael
https://www.torierobinson.com/epilepsy-sparks-insights/michael-kentris-02
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary:https://www.epilepsysparks.com/glossary
---
The websites: https://www.torierobinson.com & https://www.epilepsysparks.com
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Accurately diagnosing epilepsy can be a huge challenge when a hospital is underresourced. Michael Kentris explains how he manages with only 3 EEG machines, his work training others, using telemedicine, and more.
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More about Michael:
https://www.torierobinson.com/epilepsy-sparks-insights/michael-kentris-01
---
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
---
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Hear why genetic epilepsy syndromes (largely found in young children) have been reclassified - and not without deep thought or consideration! With world-renowned peadiatric consultant neurologist & researcher Sameer Zuberi.
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More about Sameer:
https://www.torierobinson.com/epilepsy-sparks-insights/sameer-zuberi-02
---
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
---
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Hear about precision medicine for children with genetic epilepsies with Sameer Zuberi, Consultant Paediatric Neurologist, Researcher, & Honorary Prof from the Royal Hospital for Children, Glasgow, UK - with a special mention of the rare epilepsies Dravet & CDKL5 (as June happens to be Awareness month for each).
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More about Sameer:
https://www.torierobinson.com/epilepsy-sparks-insights/sameer-zuberi-01
---
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
---
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"There is an unacceptable acceptance of having recurrent seizures and not opting for something like epilepsy surgery" - neurologist and epileptologist Ajay Asranna explains the benefits of temporal lobe resections for many with refractory temporal lobe epilepsy, and why we need to promote the surgery to make significant improvements to patients' Quality of Life.
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More about Ajay:
https://www.torierobinson.com/epilepsy-sparks-insights/ajay-asranna
---
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
---
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Ian Bone: a neurologist, honorary professor, writer, and dad to a son with epilepsy, speaks from the heart - telling us a bit about his experiences in the early 1980s, what he’s learnt, and his new book about epilepsy: “Sacred Lives”.
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More about Ian:
https://www.torierobinson.com/epilepsy-sparks-insights/ian-bone
---
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
---
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Learn of the neuroimaging technique called magnetoencephalography – or MEG - with Omar Danoun, an epileptologist from Henry Ford Health in Detroit, with specific interests in epilepsy, and both MEG & EEG source imaging.
Omar did his epilepsy fellowship at the Mayo Clinic, was a clinical neurophysiology Fellow at the University of Michigan, did his neurology residency program at Wayne State University, and is originally from Palestine in the middle east. Omar has quite the cultural experience – and speaks Arabic – all too valuable in epilepsy treatment and care. Omar is also a YouTuber - check out his channel via "More about Omar" below.
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More about Omar:
https://www.torierobinson.com/epilepsy-sparks-insights/omar-danoun
---
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
---
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Hear about what Psychogenic Non-Epileptic Seizures are, and how children experiencing them can be effectively treated. - with paediatric clinical psychologist Tyson Sawchuk - from the University of Calgary (Canada).
---
More about Tyson:
https://www.torierobinson.com/epilepsy-sparks-insights/tyson-sawchuk
---
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
---
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Hear from peadiatric neurologist and scientist Amy McTague who helps babies and families when it comes to the diagnosis, treatment, and care for the babies who have a genetic epilepsy.
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More about Amy: torierobinson.com/epilepsy-sparks-insights/amy-mctague
---
Glossary terms: epilepsysparks.com/glossary
---
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Hear of the study into the safety of the COVID vaccine for children with epilepsy - with neurologist and epileptologist Sebastian Ortiz - from Clinica del Country/Instituto Roosevelt (Colombia) & MSc Student at London School of Hygiene & Tropical Medicine (UK).
More about Sebastian: https://www.torierobinson.com/epilepsy-sparks-insights/sebastian-ortiz---
Glossary:There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
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Epilepsy research lead (PI) and lecturer in pharmacy, Cristina Reschke tells us about her work in both her exciting research into how microRNAs and circadian rhythm disruptions lead to epileptogenesis and seizures and educating pharmacists of the future regarding the epilepsies.
More about Cristina: https://www.torierobinson.com/epilepsy-sparks-insights/cristina-reschke---
Glossary:There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
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Peadiatric neurologist and epileptologist associate Julia Jacobs talks to us about her wonderful Excited Brains: Zippy & Zappy from the “knowledge2 empower” project. Julia's purpose is to educate and empower children, families, and schools when it comes to epilepsy!
More about Julia: https://www.torierobinson.com/epilepsy-sparks-insights/julia-jacobs
Glossary:There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
Follow Torie on:- Twitter: https://twitter.com/torierobinson10
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Trying to stay safe from bombs in her bathroom, meet Olha Tychkivska, a peadiatric neurologist from Lviv City Children's Clinical Hospital in Ukraine. Every day Olha is working to save the lives of children with epilepsy whilst the country is attacked.
More about Olha and how you can help: https://www.torierobinson.com/epilepsy-sparks-insights/ukraine-olha-tychkivska
Share this interview to spread awareness of the needs of Ukraine children with epilepsy and contact your pharmaceutical company now to ask how they are helping people with epilepsy in Ukraine.
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Sophie Adler talks about her Multi-centre Epilepsy Lesion Detection research project and how this enables neurologists and neurophysiologists to more effectively identify brain lesions (frequently causing epilepsy) through Machine Learning.
More about Sophie: https://www.torierobinson.com/epilepsy-sparks-insights/sophie-adler
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
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Meet Svetlana Faktorovich, a neurologist & neurophysiologist from Marcus Neuroscience Institute, Boca Raton Regional Hospital, in Florida, USA. Originally from Kyiv, Ukraine, Svetlana is now working with multiple bodies to export anti-seizure medications to people from Ukraine who have epilepsy.
More about Svetlana and how you can help: https://www.torierobinson.com/epilepsy-sparks-insights/ukraine-svetlana-faktorovich
Contact your government and pharmaceutical companies now to ask how they are helping people with epilepsy in Ukraine.
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Laureate Prof. Ingrid Scheffer & Asst. Prof. Michael Hildebrand from the University of Melbourne share their research into the genetic links between febrile seizures and a child’s likelihood of developing epilepsy.
More about Ingrid & Michael:
https://www.torierobinson.com/epilepsy-sparks-insights/ingrid-scheffer-michael-hildebrand
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
Follow Torie on:
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Check out the website: https://www.torierobinson.com
Donna Walsh, CEO at the International Bureau for Epilepsy tells us what the organisation is doing right now and what they plan to do to help people with epilepsy in Ukraine.
If you are interested in helping, contact Donna: donnawalsh@ibe-epilepsy.org
Contact your government and pharmaceutical companies now to ask how they are helping people with epilepsy in Ukraine.
More about Donna and how you can help: https://www.torierobinson.com/epilepsy-sparks-insights/ukraine-donna-walsh
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Lori Hairrell, the program developer from the non-profit ROW Foundation, US, speaks of providing anti-seizure medications to people with epilepsy in Ukraine - and how we can help - by donating just $5/£4/€4 or just sharing this video!
Contact your pharmaceutical company now to ask how they are helping people with epilepsy in Ukraine.
More about Lori, ROW Foundation supplying epilepsy drugs, and websites offering support: https://www.torierobinson.com/ukraine-row-foundation-lori-hairrell
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More about Volodymyr and how you can help: https://www.torierobinson.com/epilepsy-sparks-insights/ukraine-volodymyr-kharytonov
Dr. Volodymyr Kharytonov, the neurologist and psychiatrist from Kyiv, Ukraine, is somehow smiling and saving the lives of people affected by the epilepsies! Please watch/listen to this for an uplifting moment in all of this turmoil. Learn how you can help, easily.
Contact your government and pharmaceutical companies now to ask how they are helping people with epilepsy in Ukraine.
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Rohit Marawar from Wayne State University, in Detroit, Michigan, tells us all about epilepsy and dementia in older adults; speaking of his research and how he helps his patients with diagnoses, care, and the cognitive process of memory. We also speak of getting started on medications, and why politicians must allocate greater, fairly allocated spending to help people affected by the epilepsies.
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
Follow Torie on:
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More about Piotr, Łukasz, and websites offering support: https://www.torierobinson.com/ukraine-piotr-zwolinski-lukasz-sosnowski
Epileptologist Piotr Zwoliński and CEO Łukasz Sosnowski from Neurosphera speak of their desperation for anti-seizure medications in Ukraine. The war has caused a shortage but without a steady supply of these drugs from pharmaceutical companies, many people will have seizures, suffer injury, and in some cases, will die.
Contact your pharmaceutical company now to ask how they are helping people with epilepsy in Ukraine.
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Eleonora Aronica, a professor at the University of Amsterdam, talks about her work in the neuropathology of epilepsy.
More about Eleonora: https://www.torierobinson.com/epilepsy-sparks-insights/eleonora-aronica
Research involvement: "Epilepsy Surgery: A Patient & Carer Perspective": https://docs.google.com/forms/d/e/1FAIpQLSfuZ5HIamNW2HobboGaVq080MCNwLVY1bLqXfUtLdVtWElQ1Q/viewform
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
Follow Torie on:
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We talk to three incredible epilepsy clinicians, geneticists, and researchers from the Danish Epilepsy Center (Rikke Steensbjerre Møller, Guido Rubboli, & Elena Gardella) who are working together with a passion to positively impact the lives of people affected by genetic epilepsies.
5th Dianalund International Conference, 7-8 April 2022, 4220 Korsør, Denmark
Register: https://www.conferencemanager.dk/dice2022 Contact: genetics@filadelfia.dk
More about the team: https://www.torierobinson.com/epilepsy-sparks-insights/danish-epilepsy-center
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
Follow Torie on:
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Today we talk to Samuel Terman; an epileptologist and researcher from the University of Michigan, USA, who specialises in helping people affected by seizures and epilepsy. Samuel tells us about his research into adherence to medications, polypharmacy, deprescribing, and the high rate of multiple disabilities amongst those with epilepsy. Samuel’s work focuses on optimising the delivery of medical care for patients with epilepsy, through medication decisions, hospital utilisation and readmissions, and inpatient seizure monitoring quality of care.
Glossary: There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary (useful for clinicians as well as patients/families): here: ww.epilepsysparks.com/glossary
More about Samuel: www.torierobinson.com/epilepsy-sparks-insights/samuel-terman
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
Follow Torie on:
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Mike Kerr is a globally recognised, award-winning Neuropsychiatrist who talks about his specialist career in improving the lives of people affected by epilepsy - alongside learning disability, and mental health conditions. Mike is the Emeritus Professor of Learning Disability Psychiatry, Department of Psychological Medicine at Cardiff University, and Honorary Professor at the School of Medicine at Swansea University.
More about Mike: www.torierobinson.com/epilepsy-sparks-insights/mike-kerr
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Wesley Kerr is both a clinical epilepsy fellow at the University of Michigan, US, and a machine-learning statistician. Wesley works to improve the lives of people who experience epileptic and/or functional seizures. Wesley is big on helping patients and populations receive an accurate diagnosis earlier to hopefully have them respond better to treatments(s) and reduce negative impacts on their quality of life.
Formerly completing his neurology residency and Ph.D. in biomathematics at UCLA, Wesley shall be next year spending the majority of his time in research.
More about Wesley: https://www.torierobinson.com/epilepsy-sparks-insights/wesley-kerr
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
Follow Torie on:
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Meet Sally-Ann Remnant, a clinical nurse specialist in epilepsy who talks to us about her work and study into the impact of constipation upon people with epilepsy; particularly those who also have Intellectual Disability - and indeed how constipation can encourage seizures in some.
Sally-Ann works at Brighton & Sussex University Hospitals NHS Trust and is a nurse consultant at Epilepsy Explained; providing training on epilepsy for professional carers and nurses.
*CHECK OUT SALLY-ANN*
- LinkedIn: https://www.linkedin.com/in/sally-ann-remnant-0412b258
- Facebook: https://www.facebook.com/epilepsyexplained
- Epilepsy Explained: https://www.epilepsyexplained.co.uk
- ScienceDirect: “Constipation enhances the propensity to seizure in pentylenetetrazole-induced seizure models of mice”: https://www.sciencedirect.com/science/article/abs/pii/S1525505015000207
- ESNA: https://esna-online.org
*WATCH THE VIDEO WITH SALLY-ANN*
- YouTube: https://youtu.be/4qc3ZUs0HAE
*CONNECT WITH TORIE
Website: https://www.torierobinson.com Twitter:* https://twitter.com/torierobinson10 LinkedIn: https://www.linkedin.com/torierobinson Instagram: https://www.instagram.com/torierobinson10 * Facebook: https://www.facebook.com/TorieRobinsonSpeaker
*HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
Christos Lisgaras, a research scientist and post-doctoral fellow at the lab of Prof. Helen Scharfman at the NYU Nathan Kline Institute for Psychiatric Research talks about his epilepsy research, sharing results data, his passion for helping other young people develop their careers in the field of epileptology, and communicating effectively with PWE. Also spoken of are Christos' discoveries linking the epilepsies and Alzheimer's.
*CHECK OUT CHRISTOS*
- LinkedIn: https://www.linkedin.com/in/clisgaras
- Twitter: https://twitter.com/Chris_Lisgaras
- NKI: https://www.nki.rfmh.org/faculty/christos-lisgaras-phd
- Google Scholar: https://scholar.google.com/citations?hl=en&user=LLrTPmIAAAAJ&view_op=list_works&alert_preview_top_rm=2&sortby=pubdate
- ORCiD: https://orcid.org/0000-0003-3712-5993
*ILAE-YES (Young Epilepsy Section)*
- ILAE-YES: https://www.ilae.org/about-ilae/topical-commissions/yes/young-epilepsy-section-yes/about-us
- YouTube: https://www.youtube.com/channel/UCm02kiQ3Jd1PrIyJgC0tYMw
*CHECK OUT THE PODCAST WITH CHRISTOS*
Available on Spotify, Apple, Google, Stitcher, Amazon Music, and Deezer - Type in “Epilepsy Sparks Insights”
*CHECK OUT THE YOUTUBE VIDEO WITH CHRISTOS*
- YouTube: https://youtu.be/_8sYCx96oAQ
*CONNECT WITH TORIE*
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- YouTube: https://www.youtube.com/channel/UCm02kiQ3Jd1PrIyJgC0tYMw
*CHECK OUT TORIE’S YOUTUBE
YouTube: https://www.youtube.com/c/TorieRobinson
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
For the 10-year anniversary of its gene mutation identification, we today learn about the ultra-rare epilepsy: Alternative Hemiplegia of Childhood. Experts Rosaria Vavassoria and Prof. Alexis Arzimanoglou talk about their work to improve the lives of the families affected and indeed how far the understanding of AHC has come over the past decade!
*CHECK OUT ROSARIA & ALEXIS
Rosaria*
- LinkedIn: https://www.linkedin.com/in/rosaria-vavassori
- Facebook: https://www.facebook.com/IahcrcDataManager
- EpiCARE: https://epi-care.eu/epicare-patient-representatives
- IAHCRC: http://www.iahcrc.net
- ResearchGate: https://www.researchgate.net/profile/Rosaria-Vavassori
Alexis
- LinkedIn: https://www.linkedin.com/in/alexis-arzimanoglou-ba743729
EpiCARE: https://epi-care.eu/members-of-epicare
- Hospices Civils de Lyon: https://www.chu-lyon.fr/epilepsies-rares-et-complexes-un-reseau-europeen-coordonne-lyon
- Sant Joan de Déu Barcelona Hospital: https://www.sjdhospitalbarcelona.org/en/alexis-arzimanoglouvds
- ResearchGate: https://www.researchgate.net/scientific-contributions/Alexis-Arzimanoglou-2093846668
- ILAE: https://www.ilae.org/files/dmfile/Arzimanoglou--MC-_CV_2021.pdf
*CHECK OUT THE YOUTUBE VIDEO WITH ROSARIA & ALEXIS*
YouTube: https://youtu.be/rRuJim_TWzo
*CONNECT WITH TORIE*
- Website: https://www.torierobinson.com
- Twitter: https://twitter.com/torierobinson10
- LinkedIn: https://www.linkedin.com/torierobinson
- Instagram: https://www.instagram.com/torierobinson10
- Facebook: https://www.facebook.com/TorieRobinsonSpeaker
*HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
Meet Wyatt Bensken: an epidemiology and biostatistics academic from Case Western Reserve University, US, talking to us about his paper on the high prevalence of psychiatric and physical conditions amongst people with epilepsy, racial and ethnic disparities, and the need for policymakers to bring about change.
*CHECK OUT WYATT*
- Website: https://wyattbensken.com
- LinkedIn: https://www.linkedin.com/in/wyattbensken
- Twitter: https://twitter.com/Wyatt_Bensken
- ResearchGate: https://www.researchgate.net/profile/Wyatt-Bensken-2
- Paper in question: https://www.researchgate.net/publication/355687923_Burden_of_Chronic_and_Acute_Conditions_and_Symptoms_in_People_With_Epilepsy
- MDedge: https://www.mdedge.com/neurology/article/184175/business-medicine/think-research-just-md-phds-think-again
*CHECK OUT THE YOUTUBE VIDEO WITH WYATT* https://youtu.be/YdYARE1AJ78
*CONNECT WITH TORIE*
- Website:https://www.torierobinson.com
- Twitter:https://twitter.com/torierobinson10
- LinkedIn:https://www.linkedin.com/torierobinson
- Instagram: https://www.instagram.com/torierobinson10
- Facebook: https://www.facebook.com/TorieRobinsonSpeaker
*HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY* https://www.torierobinson.com/contact
Today we are talking about sex for people with epilepsy - with Charlotte Lawthom, a consultant Neurologist at Aneurin Bevan Health Board, professor at Swansea University, Wales, UK, and total dog-lover! Charlotte has a wonderful openness and passion for improving the lives of people affected by the epilepsies - including people with intellectual disability and other comorbidities.
*CHECK OUT CHARLOTTE*
- LinkedIn: https://www.linkedin.com/in/charlotte-lawthom-aa32096b
- Twitter: https://twitter.com/CLawthom
- ResearchGate: https://www.researchgate.net/scientific-contributions/Charlotte-Lawthom-2173039778
*CHECK OUT THE YOUTUBE VIDEO WITH CHARLOTTE*
- YouTube: https://www.youtube.com/c/TorieRobinson/videos
*CONNECT WITH TORIE*
- Website: https://www.torierobinson.com
- Twitter: https://twitter.com/torierobinson10
- LinkedIn: https://www.linkedin.com/torierobinson
- Facebook:https://www.facebook.com/TorieRobinsonSpeaker
*HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
Welcome to 2022! Our first interview of the year is with Julie Nys, Ph.D.; who tells us why she is working to improve the lives of people with epilepsy - through developing the seizure detection device: EpiCare@Home. For many, this shall play a part in diagnoses, effective treatments, patient and family, empowerment, and much, much more.
Topics Julie and I chat about include:
• Explaining the device
• Product development
• My experience in testing the device
• Brain monitoring and insights
• Personal evolution of epilepsy
• How the EpiCare@Home compares to a "regular" EEG (quality, price, privacy)
• Extending the monitoring period outside of the hospital
• Brain activity patterns in the home environment
• Reductions in cost to health providers
• Speeding up precision medicine
• Data quality
• Patient involvement
• Empowering users - adults, children, and carers
• Working with (and not against) other software and device companies, neurologists, epilepsy care centres, etc.
• Examples, and benefits of use
• The shift from research to clinical practice
• Improving communications between patient and clinicians
TERMS USED - FIND IN THE GLOSSARY: https://www.epilepsysparks.com/glossary
EEG, video telemetry, ambulatory EEG, neurophysiologists, ASMs, comorbidities, data quality, precision medicine
People mentioned: Prof. Rohit Shankar
CONNECT WITH TORIE
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/TorieRobinsonSpeaker
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY
https://www.torierobinson.com/contact
CHECK OUT JULIE, BYTEFLIES & Epicare@Home
• LinkedIn: https://www.linkedin.com/in/julie-nys-phd-884b1876
• Twitter: https://twitter.com/JNys86
• epicare@home: https://www.epicareathome.com
• Byteflies: https://www.byteflies.com/our-team
CHECK OUT THE VIDEO WITH JULIE
https://youtu.be/0BgrQ_sHJDU
Today we are talking to Dr. Sallie Baxendale, a consultant neuropsychologist and part of the Epilepsy Surgery program meat the National Hospital for Neurology and Neurosurgery, Queens Square, London! We talk about her work in assessing and preparing People With Epilepsy for potential epilepsy neurosurgery, and how the mental health conditions experienced by many can form a huge part of the picture for people when it comes to surgery and quality of life.
We also talk about the impact of social media when it comes to impacts on people with epilepsy, how it affects people, and what Sallie and her colleagues have learned from it.
We also talk about the impact of social media when it comes to impacts on people with epilepsy, how it affects people, and what Sallie and her colleagues have learned from it.
*CHECK OUT SALLIE*
- UCL: https://www.ucl.ac.uk/ion/news/2018/aug/dr-sallie-baxendale-receives-award-international-neuropsychological-society
- ResearchGate: https://www.researchgate.net/profile/Sallie-Baxendale
- Wiley: https://onlinelibrary.wiley.com/action/doSearch?ContribAuthorRaw=Baxendale%2C+Sallie
- Sallie’s book: https://www.amazon.co.uk/Coping-Memory-Problems-Sallie-Baxendale/dp/1529329213
- British Psychological Society: https://thepsychologist.bps.org.uk/volume-31/october/neuropsychology-award
- ILAE: https://www.ilae.org/sallie-baxendale/contact
*CHECK OUT THE YOUTUBE VIDEO WITH SALLIE*
- YouTube: https://bit.ly/32oU2mw
*CONNECT WITH TORIE*
- Website: https://www.torierobinson.com
- Twitter: https://twitter.com/torierobinson10
- LinkedIn:https://www.linkedin.com/torierobinson
- Instagram: https://www.instagram.com/torierobinson10
- Facebook:https://www.facebook.com/TorieRobinsonSpeaker
Today we talk to Farooq Shaikh about his exciting research into how the contents of some fruit may (or may not) be able to help control seizures!
We talk about neuroinflammation, genomics, "negative" results (which are positive!), drug discovery, and more.
In addition to being an associate professor, neuropharmacologist, and Research Strength Leader at Monash University Malaysia, Farooq works with Epilepsy Malaysia to help challenge the stigma faced by so many with epilepsy.
Farook is a recipient of Monash's PVC award for Excellence in Research in 2018 and a commendation in 2020. He is also the recipient of the Malaysian Society of Neuroscience (MSN)-best publication award in 2017. He was awarded the 2019 best young researcher and best young pharmacology teacher award by the Malaysian Society of Pharmacology & Physiology. He is involved in Ph..D supervision and publishing papers in high impact journals and has published over 100 peer-reviewed articles including book chapters in quality international journals (see some links below).
Farook is a recipient of Monash's PVC award for Excellence in Research in 2018 and a commendation in 2020. He is also the recipient of the Malaysian Society of Neuroscience (MSN)-best publication award in 2017. He was awarded the 2019 best young researcher and best young pharmacology teacher award by the Malaysian Society of Pharmacology & Physiology. He is involved in Ph..D supervision and publishing papers in high impact journals and has published over 100 peer-reviewed articles including book chapters in quality international journals (see some links below).
*CHECK OUT FAROOQ*
Twitter: https://twitter.com/MdFarooq_Shaikh
LinkedIn: https://www.linkedin.com/in/dr-mohd-farooq-shaikh-phd-gche-950359a
Facebook: https://www.facebook.com/smfarooq25
Monash Uni: https://www.monash.edu.my/jcsmhs/staff/academic/mohd-farooq-shaikh
ResearchGate: https://www.researchgate.net/profile/Mohd-Farooq-Shaikh
Loop: https://loop.frontiersin.org/people/291473/overview
Jove: https://www.jove.com/methods-collections/editor/134/mohd-farooq-shaikh
Impactio: https://www.impactio.com/researcher/mohd-farooq-shaikh
*CHECK OUT THE YOUTUBE VIDEO WITH FAROOQ*
YouTube: https://www.youtube.com/c/TorieRobinson/videos
*CONNECT WITH TORIE*
Website: https://www.torierobinson.com
Twitter: https://twitter.com/torierobinson10
LinkedIn: https://www.linkedin.com/torierobinson
Facebook: https://www.facebook.com/TorieRobinsonSpeaker
*CHECK OUT TORIE’S YOUTUBE & BLOG
YouTube: https://www.youtube.com/c/TorieRobinson
Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
Today we are talking to Danielle Andrade, an epileptologist and professor of medicine at the University of Toronto who is working tirelessly to improve the experiences of people and families affected by genetic epilepsies when they transition from paediatric to adult care.
This transition is crucial – and actually reminds me of when you might start a new job – you have to learn about your new team and boss, reintroduce yourself – who despite your CV/resume don’t really know who you are and what your personal needs for development are. It’s tiring and sometimes frustrating to have to reintroduce yourself (or in this case, often a loved one that you care for who has epilepsy, and indeed can be a risky time should there be miscommunications.
Adult neurologists often aren’t overly familiar with the rare genetic epilepsies and it’s crucial for people not to fall through the cracks. Danielle and her team are improving this transition massively, often interacting with other clinicians who have or who shall also be caring for the person. Conditions often include cognitive disability, congenital issues, intellectual disability, cardiac issues, and psychiatric illnesses.
*CHECK OUT DANIELLE
Twitter: https://twitter.com/DrDaniAndrade
LinkedIn: https://www.linkedin.com/in/danielle-molinari-andrade-8b4b9419
UHN: https://www.uhnresearch.ca/researcher/danielle-andrade
Uni of Toronto: http://www.neuroscience.utoronto.ca/faculty/list/andrade.htm & https://facdir.deptmedicine.utoronto.ca/Detail.aspx?id=1630&showdivisiontitle=1&division_id=N04
ResearchGate:* https://www.researchgate.net/profile/Danielle-Andrade-2
*CHECK OUT THE YOUTUBE VIDEO WITH NATHAN*
YouTube: https://youtu.be/-Q5TwlJ4xAM
*CONNECT WITH TORIE
Website: https://www.torierobinson.com
Twitter: https://twitter.com/torierobinson10
LinkedIn: https://www.linkedin.com/torierobinson
Facebook:* https://www.facebook.com/TorieRobinsonSpeaker
*CHECK OUT TORIE’S YOUTUBE & BLOG
YouTube: https://www.youtube.com/c/TorieRobinson
Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
Meet Alice Winsor, a research associate at King's College London working on the Integrating Mental & Physical healthcare: Research, Training & Services (IMPARTS) project in epilepsy - an initiative aiming to bridge together physical and mental healthcare. This is the first time the project shall be rolled out amongst young people with epilepsy.
Feel free to contact Alice (see below) to learn more about involvement!
alice.winsor@kcl.ac.uk
*CHECK OUT THE YOUTUBE VIDEO WITH ALICE*
- YouTube: https://www.youtube.com/c/TorieRobinson/videos
*CONTACT ALICE*
- Email: alice.winsor@kcl.ac.uk
*CHECK OUT ALICE*
- Twitter: https://twitter.com/WinsorAlice
- LinkedIn: https://www.linkedin.com/in/alice-winsor-833b19110
*READ ABOUT ALICE’S WORK*
- ResearchGate: https://www.researchgate.net/profile/Alice-Winsor
- PubMed: https://pubmed.ncbi.nlm.nih.gov/?term=Winsor+AA&cauthor_id=33561679
- Orcid: https://orcid.org/0000-0001-6689-2425
- IMPARTS: https://imparts.org
- King’s Health Partners: https://www.kingshealthpartners.org
- King’s College Hospital: https://www.kch.nhs.uk
- Richards Lab: https://carolinerichards.net/people
- Pal Lab: https://childhoodepilepsy.org
- Richardson Lab: https://epilepsy-london.org
- Bagshaw Lab: https://www.birmingham.ac.uk/research/centre-for-human-brain-health/labs-groups-networks/MIG/MIG-People.aspx
- Birmingham Uni: https://research.birmingham.ac.uk/portal/en/publications/sleep-disruption-in-children-and-adolescents-with-epilepsy(9462c710-54c7-4ba6-9f61-2e46e6e614f8).html
- Epilepsy Sparks: https://www.epilepsysparks.com/blog/sleep-disruption-in-childhood-epilepsy-alice-winsor
*CONNECT WITH TORIE*
- Website: https://www.torierobinson.com
- Twitter: https://twitter.com/torierobinson10
- LinkedIn: https://www.linkedin.com/torierobinson
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*CHECK OUT TORIE’S YOUTUBE & BLOG*
- YouTube: https://www.youtube.com/c/TorieRobinson
- Blog: https://www.torierobinson.com/blog
*HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
Today we are talking to Nathan Pevy, a Ph.D. student from Sheffield Uni looking into the differences between types of losses of consciousness - covering epilepsy, PNES (Psychogenic Non-Epileptic Seizures)/NEAD (Non-Epileptic Attack Disorder), and Syncope (fainting); to figure out how to more effectively diagnose each. After all, to many, each can look pretty similar and we aren’t keen on misdiagnoses…
Nathan has both a degree in psychology and a master's in computational neuroscience, and is now mixing the two in his Ph.D. to benefit people affected by the aforementioned!
GET INVOLVED IN THE PROJECT
“Using a 'digital doctor' for diagnosis”: https://theipep.shef.ac.uk/projectSummary
Patient Information Sheet: https://theipep.shef.ac.uk/patientInformationExternal
Witness Information Sheet: https://theipep.shef.ac.uk/witnessInformationExternal
Consent to Contact Form: https://theipep.shef.ac.uk/interest
ANY QUESTIONS FOR NATHAN?
ndpevy1@sheffield.ac.uk
CHECK OUT NATHAN
https://twitter.com/nathanpevy
Sheffield Uni: https://www.sheffield.ac.uk/engineering/about/equality-diversity-inclusion/nathans-story
CHECK OUT THE YOUTUBE VIDEO WITH NATHAN
YouTube: https://www.youtube.com/c/TorieRobinson/videos
CONNECT WITH TORIE
Website: https://www.torierobinson.com
Twitter: https://twitter.com/torierobinson10
LinkedIn: https://www.linkedin.com/torierobinson
Facebook: https://www.facebook.com/TorieRobinsonSpeaker
CHECK OUT TORIE’S YOUTUBE & BLOG
YouTube: https://www.youtube.com/c/TorieRobinson
Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY
https://www.torierobinson.com/contact
Today we are talking to Professor Cathy Abbott; Professor of Mammalian Molecular Genetics at the University of Edinburgh, UK. With her lab team using CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats) technology, Cathy is working to find answers to the rare genetic epilepsy eEF1A; trying to figure out what’s going on with the eEF1A gene when rare mutations of it can cause developmental delay, intellectual disability, and autism (in addition to the epilepsy). Cathy is very involved with patient families and has a website dedicated to communications with them - and anyone interested!
CHECK OUT THE YOUTUBE VIDEO WITH CATHY
* YouTube: https://www.youtube.com/c/TorieRobinson/videos
CHECK OUT CATHY
* Twitter: https://twitter.com/CathyAbbottLab
READ ABOUT CATHY’S WORK
Uni of Edinburgh: https://www.ed.ac.uk/centre-genomic-medicine/research-groups/abbott-group
eEF1A2 Epilepsy: https://eef1a2epilepsy.com/who-we-are
Orcid: https://orcid.org/0000-0001-8794-7173
Wikipedia: https://en.wikipedia.org/wiki/Catherine_Abbott
CONNECT WITH TORIE
Website: https://www.torierobinson.com
Twitter: https://twitter.com/torierobinson10
LinkedIn: https://www.linkedin.com/torierobinson
Facebook:https://www.facebook.com/TorieRobinsonSpeaker
CHECK OUT TORIE’S YOUTUBE & BLOG
- YouTube: https://www.youtube.com/c/TorieRobinson
- Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY
https://www.torierobinson.com/contact
Today we are talking to Emma Palmer; both a clinical geneticist at Sydney Childrens’ Hospital Network and a researcher at the University of New South Wales, Australia. Her interests are around how to improve the diagnosis of genetic epilepsies, and improve the model of care for genetic epilepsies more specifically and rare conditions more broadly. Emma is passionate about improving the patient and family journey for all affected by the rare epilepsies.
*CHECK OUT EMMA*
• Twitter: https://twitter.com/emmagenetics
• LinkedIn: https://www.linkedin.com/in/elizabeth-emma-palmer-470a91121/
*READ ABOUT EMMA’S WORK*
• UNSW: https://research.unsw.edu.au/people/dr-elizabeth-emma-palmer
• ResearchGate: https://www.researchgate.net/profile/Elizabeth-Palmer-9
• Sydney Childrens’ Hospital Network: https://www.schn.health.nsw.gov.au/news/articles/2021/02/rare-diseases-not-as-rare-as-you-think
• Oxford Handbooks: https://www.oxfordhandbooks.com/view/10.1093/oxfordhb/9780190669164.001.0001/oxfordhb-9780190669164-e-13
*CHECK OUT THE YOUTUBE VIDEO WITH EMMA*
• YouTube: https://www.youtube.com/c/TorieRobinson/videos
*CONNECT WITH TORIE*
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook:https://www.facebook.com/TorieRobinsonSpeaker
*CHECK OUT TORIE’S YOUTUBE & BLOG**
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY
https://www.torierobinson.com/contact
Today we are talking to Dr. Sukhvir Wright who through scientific research is trying to improve the developmental outcomes of children affected by immune-mediated neurological disease; mostly immune-mediated seizures and epilepsy/encephalitis. Sukhvir is a Wellcome Trust Clinical Research Career Development Fellow at the Institute of Health and Neurodevelopment at Aston University and an honorary paediatric neurologist at Birmingham Women’s and Children’s Hospital.
CHECK OUT SUKHVIR
Aston Uni: https://research.aston.ac.uk/en/persons/sukhvir-wright
READ ABOUT SUKHVIRE’S WORK
Birmingham Women’s and Children’s NHS Foundation Trust: https://bwc.nhs.uk/-our-neuro-immunology-team/
ERUK: https://epilepsyresearch.org.uk/eruk-fellow-awarded-million-pound-research-grant/
BPNA: https://bpna.org.uk/index.php?page=member-profile&rid=1236762149
CHECK OUT THE YOUTUBE VIDEO WITH SUKHVIR
• YouTube: https://www.youtube.com/c/TorieRobinson/videos
CONNECT WITH TORIE
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/TorieRobinsonSpeaker
CHECK OUT TORIE’S YOUTUBE & BLOG
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY
https://www.torierobinson.com/contact
Today we talk to Aswin Chari, an academic neurosurgical trainee; Ph.D. student at Great Ormond Street Hospital and UCL. When Aswin grows up, he wants to be an academic neurosurgeon (!); where he balances looking after patients and doing research into improving outcomes for children with epilepsy.
Aswin is also the Clinical Fellow on the National Institute for Health and Care Excellence (NICE) guideline on the diagnosis and management of epilepsy, an Associate Editor for the British Journal of Neurosurgery, and the research lead for the neurosurgical charity Brainbook.
*CONNECT WITH ASWIN*
• Twitter: https://twitter.com/aswinchari
*READ ABOUT ASWIN’S WORK*
UCL: https://iris.ucl.ac.uk/iris/browse/profile?upi=ACHAB77
ResearchGate: https://www.researchgate.net/profile/Aswin-Chari
Brainbook: https://brainbookcharity.org/meet-the-team
*CHECK OUT THE PODCAST WITH ASWIN*
Available on Spotify, Apple, Google, Stitcher, Amazon Music, and Deezer - Type in “Epilepsy Sparks Insights”
*CONNECT WITH TORIE*
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook:https://www.facebook.com/TorieRobinsonSpeaker
*CHECK OUT TORIE’S YOUTUBE & BLOG*
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
*HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
Meet Caroline Scott, a Clinical Scientist and the Video Telemetry Service Lead at Birmingham Children's hospital. We shall be hearing about how she helps prepare children affected by refractory epilepsy for surgery and the massive positive differences that her care and both regular and intracranial EEGs offer.
*CONNECT WITH CAROLINE*
• https://bwc.nhs.uk/caroline-scott **READ ABOUT CAROLINE’S WORK
Birmingham Children's Hospital: https://partnersinpaediatrics.org/wp-content/uploads/2020/10/Welcome-to-CESS.pdf CHECK OUT THE YOUTUBE VIDEO WITH CAROLINE**
• YouTube: https://www.youtube.com/c/TorieRobinson/videos
*CONNECT WITH TORIE*
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook:https://www.facebook.com/TorieRobinsonSpeaker
*CHECK OUT TORIE’S YOUTUBE & BLOG*
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
*HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
Today; Torie is talking to Elena Muñoz & José Aibar from the Dravet Syndrome Foundation EU about (as you can probably guess from the name) the rare genetic epilepsy Dravet Syndrome. They chat about the work that they put into finding an effective treatment for Dravet through scientific research and how they educate clinicians and families from around the world. A bold statement of theirs is: "We want to find a drug within three years that eliminates the symptoms and allows us to preserve the cognitive state of our patients until we are able to find a definitive solution for the disease.".
*CHECK OUT THE YOUTUBE VIDEO WITH JOSE & ELENA
https://www.youtube.com/c/TorieRobinson/videos
CONNECT WITH THE DRAVET SYNDROME FOUNDATION EU TEAM *
• https://www.dravetfoundation.eu
• https://www.linkedin.com/in/elena-cardenal
• https://www.linkedin.com/in/jaibar
*CONNECT WITH TORIE*
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/TorieRobinsonSpeaker
*CHECK OUT TORIE’S YOUTUBE & BLOG*
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
*HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
Meet Dr Rhys Thomas, a Consultant Neurologist, Epilepsy Neuroscientist,and Intermediate Clinical Fellow at Newcastle University, whose interests include the genetic causes and consequences of the epilepsies. Rhys is a wonderful example of an epilepsy specialist who communicates equally wonderfully with colleagues as well as families and patients.
*CONNECT WITH RHYS*
• Twitter: https://twitter.com/Dr_Rhys
*READ ABOUT RHYS’ WORK*
- Newcastle Uni: https://www.ncl.ac.uk/medical-sciences/people/profile/rhysthomas.html
- Epilepsy Sparks: https://www.epilepsysparks.com/blog/planning-the-future-for-the-epilepsies
- ILAE: https://ilaebritish.org.uk/council-members & https://www.ilae.org/guidelines/definition-and-classification/proposed-classification-and-definition-of-epilepsy-syndromes/proposed-classification-syndromes-with-onset-at-variable-ages
- PubMed: https://pubmed.ncbi.nlm.nih.gov/?term=Thomas+RH&cauthor_id=33949685
• Disability North: https://www.disabilitynorth.org.uk/trustee/rhys-thomas
• Seizure - European Journal of Epilepsy: https://www.journals.elsevier.com/seizure-european-journal-of-epilepsy/editorial-board
• BMJ: https://pn.bmj.com/pages/editorial-board
• SUDEP Action: https://sudep.org/article/epilepsy-safety-education-tools-win-prestigious-medical-award
• ERUK: https://epilepsyresearch.org.uk/officers_charity/dr-rhys-thomas
CHECK OUT THE YOUTUBE VIDEO WITH RHYS
• YouTube: https://www.youtube.com/c/TorieRobinson/videos
CONNECT WITH TORIE
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/TorieRobinsonSpeaker
CHECK OUT TORIE’S YOUTUBE & BLOG
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY
https://www.torierobinson.com/contact
Do you/someone you care for experience tonic/tonic-clonic seizures? We want to improve seizure detection devices, so have your say (it’s confidential) about your experience with the device(s) by taking part in the easy, short epilepsy seizure detection device study! https://bit.ly/3u6kmv8 It only takes 5/6mins!
The study is open to People With Epilepsy, Carers who have insight, and clinicians. Available in English, German, Danish, Dutch, and Hungarian!
Sándor Beniczky is a neurophysiologist, neurologist, and epileptologist from AARHUS University and The Epilepsy Hospital, Denmark, working to improve the worlds of PWE (People with Epilepsy). https://bit.ly/3u6kmv8
LISTEN TO OTHER INTERVIEW WITH SANDOR
https://spoti.fi/2ZCToQR
WATCH OTHER INTERVIEW WITH SANDOR
https://youtu.be/MRN0Yf836tY
CONNECT WITH SÁNDOR
• LinkedIn: https://www.linkedin.com/in/s%C3%A1ndor-beniczky-2a6a4a11
• Twitter: https://twitter.com/SBeniczky
• Facebook: https://www.facebook.com/profile.php?id=100014300773973
READ ABOUT SÁNDOR’S WORK
• Seizure detection device study: https://bit.ly/3u6kmv8
• ResearchGate: https://www.researchgate.net/profile/Sandor-Beniczky
• The Epilepsy Hospital: http://www.filadelfia.dk/en/epilepsihospitalet
• AARHUS University: https://pure.au.dk/portal/en/persons/sndor-beniczky(7080ac19-d0e8-494a-8a88-96de52d4e55d).html
• ILAE: https://www.ilae.org/sandor-beniczky
CHECK OUT THE YOUTUBE VIDEO WITH SÁNDOR
• YouTube: https://www.youtube.com/c/TorieRobinson/videos
CONNECT WITH TORIE
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/TorieRobinsonSpeaker
CHECK OUT TORIE’S YOUTUBE & BLOG
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY
https://www.torierobinson.com/contact
Meet Dr Colin Dunkley; a consultant paediatrician based at Sherwood Forest Hospitals NHS Foundation Trust who specialises in helping children affected by the epilepsies. Colin is the clinical lead of Epilepsy12 - the aim of which is to help epilepsy services to measure and improve care for children and young people affected by the epilepsies across England and Wales.
*CHECK OUT THE VIDEO INTERVIEW WITH COLIN*
• YouTube: https://youtu.be/c_jC-0hCjfU
*CONNECT WITH COLIN*
• Twitter: https://twitter.com/drcolindunkley
*READ ABOUT COLIN’S WORK*
• ResearchGate: https://www.researchgate.net/profile/Colin-Dunkley
• PubMed: https://pubmed.ncbi.nlm.nih.gov/?term=Dunkley+C&cauthor_id=26659723
• BMJ: https://adc.bmj.com/content/104/Suppl_3/A154.3
*WATCH COLIN’S VIDEO ABOUT THE EPILEPSY12 PROJECT*
• Epilepsy 12 Project: https://www.rcpch.ac.uk/resources/epilepsy12-national-organisational-audit-clinical-audit-2021
*CONNECT WITH TORIE*
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/TorieRobinsonSpeaker
*CHECK OUT TORIE’S YOUTUBE & BLOG*
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
*HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
Meet Christin Godale, a neuroscience Ph.D. candidate and epilepsy researcher at the University of Cincinnati, Ohio; who also happens to have refractory epilepsy.
Other facts: Christin is a Board member of the Future of Research and also used to be a model!
Get ready to hear about when: Christin had a tonic-clonic seizure in a public place... and those around her thought that she was doing yoga…
*CHECK OUT THE YOUTUBE VIDEO WITH CHRISTIN*
• YouTube: https://youtube.com/c/TorieRobinson
*CONNECT WITH CHRISTIN*
• Twitter: https://twitter.com/christingodale
• LinkedIn: https://www.linkedin.com/in/christingodale
*READ ABOUT CHRISTIN’S WORK*
• ResearchGate: https://www.researchgate.net/profile/Christin-Godale
• PubMed: https://pubmed.ncbi.nlm.nih.gov/29774009
• British Journal of Anesthesia: https://www.bjanaesthesia.org/article/S0007-0912(19)30649-X/fulltext
*WATCH CHRISTIN’S VIDEO ABOUT HER WORK*
https://www.youtube.com/watch?v=pWnhbkw49y0
*CONNECT WITH TORIE*
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/TorieRobinsonSpeaker
*CHECK OUT TORIE’S YOUTUBE & BLOG*
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
*HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
Meet Javier Peña Ceballos, an “Advanced Nursing Practitioner in Epilepsy” candidate at Beaumont Hospital in Dublin in the Republic of Ireland. Javier and Torie talk about how important specialist epilepsy nurses are, why people affected by epilepsy so need them, and how they work with neurologists, neurophysiologists, neurosurgeons; all to provide the best care for each patient!
*CONNECT WITH JAVIER*
• LinkedIn: https://www.linkedin.com/in/javier-pe%C3%B1a-ceballos-640469138
*READ ABOUT JAVIER’S WORK*
• Epilepsy Sparks: https://www.epilepsysparks.com/blog/a-day-in-the-life-of-an-epilepsy-research-nurse-kings-college-hospital-london
• Castle Study: https://castlestudy.org.uk/the-research-team/javier-pena-ceballos
• PubMed: https://pubmed.ncbi.nlm.nih.gov/33471366
*CHECK OUT THE YOUTUBE VIDEO WITH JAVIER*
• YouTube: https://www.youtube.com/c/TorieRobinson/videos
*CONNECT WITH TORIE*
• Website:https://www.torierobinson.com
• Twitter:https://twitter.com/torierobinson10
• LinkedIn:https://www.linkedin.com/torierobinson
• Facebook:https://www.facebook.com/TorieRobinsonSpeaker
*CHECK OUT TORIE’S YOUTUBE & BLOG*
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
*HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
Rohit Shankar, MBE; is a professor and consultant in developmental neuropsychiatry for adults with Intellectual Disabilities - many of whom also have epilepsy. Rohit and Torie talk about his work with people affected, their carers, families, SUDEP, psychiatric comorbidities, and what we need to do to provide people affected with an improved quality of life.
Rohit is a professor in Neuropsychiatry at the University of Plymouth Medical School, director of its Cornwall Intellectual Disability Equitable Research (CIDER) unit, and Consultant in developmental Neuropsychiatry & Clinical Director at Cornwall Partnership NHS FT, and Chair of the South West Royal College of Psychiatrists.
*CONNECT WITH ROHIT*
• LinkedIn: https://www.linkedin.com/in/rohit-shankar-71a53376
• Twitter: https://twitter.com/haritsa1
• Facebook: https://www.facebook.com/rohit.shankar.10
*READ ABOUT ROHIT’S WORK*
• RCPsych:
https://www.rcpsych.ac.uk/about-us/our-people-and-how-we-make-decisions/council/council-members/detail/dr-rohit-shankar
https://www.rcpsych.ac.uk/docs/default-source/improving-care/better-mh-policy/position-statements/position-statement-ps0521-stomp-stamp.pdf?sfvrsn=684d09b3_6
• CIDER – Cornwall Intellectual Disability Equitable Research: https://www.plymouth.ac.uk/research/cider-cornwall-intellectual-disability-equitable-research
• ILAE: https://www.ilae.org/about-ilae/awards/epileptic-disorders-educational-prize/rohit-shankar-2018
• ResearchGate: https://www.researchgate.net/profile/Rohit_Shankar2
• BMJ - SUDEP Action: https://sudep.org/article/epilepsy-safety-education-tools-win-prestigious-medical-award
*CHECK OUT THE YOUTUBE VIDEO WITH ROHIT*
• YouTube: https://www.youtube.com/c/TorieRobinson
*CONNECT WITH TORIE*
• Website:https://www.torierobinson.com
• Twitter:https://twitter.com/torierobinson10
• LinkedIn:https://www.linkedin.com/
Meet Mona Heiland, a final year Ph.D. student from RCSI, Ireland who under the supervision of Prof David Henshall is studying the effects ofcannabidiol (CBD) on microRNA expressions in epilepsy.
CBD has shown its potential as an Anti-Seizure Medication; especially for drug-refractory genetic types of epilepsy, however, the underlying molecular mechanisms of CBD’s anti-seizure activities are still unknown. Mona investigates whether the anti-seizure effects of CBD are dependent on the regulation of microRNAs.
*CONNECT WITH MONA*
• Twitter: https://twitter.com/MonaHeiland
*READ ABOUT MONA’S WORK*
• Website: https://www.futureneurocentre.ie/people/mona-heiland
• ResearchGate: https://www.researchgate.net/profile/Mona-Heiland
• RCSI: https://repository.rcsi.com/authors/Mona_Heiland/7896944
*CHECK OUT THE YOUTUBE VIDEO WITH MONA*
• YouTube: https://www.youtube.com/c/TorieRobinson/videos
*CONNECT WITH TORIE*
• Website:https://www.torierobinson.com
• Twitter:https://twitter.com/torierobinson10
• LinkedIn:https://www.linkedin.com/torierobinson
• Facebook:https://www.facebook.com/TorieRobinsonSpeaker
*CHECK OUT TORIE’S YOUTUBE & BLOG*
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
*HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
Meet Dr. Janine Winterbottom, an Advanced Nurse Specialist in Epilepsy and Independent Nurse Prescriber from The Walton Centre NHS Foundation Trust in Liverpool, UK. Janine is doing research into how best to care for and empower women affected by epilepsy when it comes to planning children (or planning not to have children!). Janine strongly encourages Patient Involvement! Watch/listen to learn more.
*FOR MORE INFO ON THE STUDY*
Check out the video: epilepsypreconceptionstudy
Call the research team (UK): 0151 556 3721
Email the research team: preconceptionstudy@thewaltoncentre.nhs.uk
*CONNECT WITH JANINE*
• LinkedIn: https://www.linkedin.com/in/janine-winterbottom-209053128
• Facebook: https://www.facebook.com/janine.winterbottom.75
*READ ABOUT JANINE’S WORK*
• Website: https://www.thewaltoncentre.nhs.uk/News/376/new-animation-aims-to-give-epilepsy-patients-confidence-to-start-a-family.html
• ResearchGate: https://www.researchgate.net/profile/Janine-Winterbottom-2
*CHECK OUT THE YOUTUBE VIDEO WITH JANINE*
• YouTube: https://www.youtube.com/c/TorieRobinson
*CONNECT WITH TORIE*
• Website:https://www.torierobinson.com
• Twitter:https://twitter.com/torierobinson10
• LinkedIn:https://www.linkedin.com/torierobinson
• Facebook:https://www.facebook.com/TorieRobinsonSpeaker
*CHECK OUT TORIE’S YOUTUBE & BLOG*
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
*HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
Meet Prof. Gavin Woodhall, a neuropharmacologist, epilepsy researcher, and director for the Institute for Health and Neurodevelopment at Aston University, Birmingham, UK. Or, as Gavin would say “Mostly, I just run a lab!”. Gavin is particularly interested in severe epilepsy syndromes. A key question of his is “What makes a brain develop epilepsy (epileptogenesis)?”
CONNECT WITH GAVIN
• LinkedIn :https://www.linkedin.com/in/gavin-woodhall-a2bba312
READ ABOUT GAVIN’S WORK
• Website: https://research.aston.ac.uk/en/persons/gavin-l-woodhall
• ResearchGate: https://www.researchgate.net/profile/Gavin-Woodhall
CHECK OUT THE YOUTUBE VIDEO WITH GAVIN
• YouTube: https://www.youtube.com/c/TorieRobinson
CONNECT WITH TORIE
• Website:https://www.torierobinson.com
• Twitter:https://twitter.com/torierobinson10
• LinkedIn:https://www.linkedin.com/torierobinson
• Facebook:https://www.facebook.com/TorieRobinsonSpeaker
CHECK OUT TORIE’S YOUTUBE & BLOG
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY
https://www.torierobinson.com/contact
Meet Professor Ley Sander, a consultant neurologist at the National Hospital for Neurology and Neurosurgery, London, with a special interest in epilepsy.
Ley is Head of the Department of Clinical and Experimental Epilepsy at UCL Queen Square and works across the continents to empower those in LMICs (Low-Middle Income Countries) regarding epilepsy prevention, treatment, and seizure control. Ley also has a talent for photography!
We talk about how Ley got into his passion for helping people affected by epilepsy, his work today, and some of the clear obstacles when it comes to minimising epilepsy cases - such as clean water.
CONNECT WITH LEY
• LinkedIn: https://www.linkedin.com/in/ley-sander-223645b
• Twitter: https://twitter.com/leysander
• Instagram: https://instagram.com/ley.sander
READ ABOUT LEY’S WORK
• UCLH: https://www.uclh.nhs.uk/our-services/find-consultant/professor-ley-sander
• Epilepsy Pathway Innovation in Africa: https://epina.web.ox.ac.uk
• ResearchGate: https://www.researchgate.net/profile/Ley-Sander
• Epilepsy Society: https://epilepsysociety.org.uk/latest/news/top-epilepsy-expert-nine-years & https://epilepsysociety.org.uk/what-we-do/research/our-researchers/ley-sander
• The Lancet Neurology: https://www.thelancet.com/laneur/editorial-advisory-board
CHECK OUT THE YOUTUBE VIDEO WITH LEY
• YouTube: https://youtu.be/G-UD2SvUcvo
CONNECT WITH TORIE
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/TorieRobinsonSpeaker
CHECK OUT TORIE’S YOUTUBE & BLOG
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY
https://www.torierobinson.com/contact
Meet Professor Simon Keller, an imaging neuroscientist from the University of Liverpool. Simon tells us about his neuroimaging work, his passion for helping those affected by epilepsy, and his cool images!
CONNECT WITH SIMON
Twitter: https://twitter.com/BrainImagingUoL
READ ABOUT SIMON’S WORK
ResearchGate: https://www.researchgate.net/profile/Simon-Keller-2
**The Liverpool BRAIN lab (Brain Research using Advanced Imaging in Neurology)
https://www.liverpool.ac.uk/translational-medicine/research/brain-imaging/
University of Liverpool: https://www.liverpool.ac.uk/systems-molecular-and-integrative-biology/staff/simon-keller
CHECK OUT THE YOUTUBE VIDEO WITH SIMON
YouTube: https://youtu.be/2gxoNo9hmN4
CONNECT WITH TORIE
Website:https://www.torierobinson.com
Twitter:https://twitter.com/torierobinson10
LinkedIn:https://www.linkedin.com/torierobinson
Facebook:https://www.facebook.com/TorieRobinsonSpeaker
CHECK OUT TORIE’S YOUTUBE & BLOG
YouTube: https://www.youtube.com/c/TorieRobinson
Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY
https://www.torierobinson.com/contact
Professor Sándor Beniczky from AARHUS University and The Epilepsy Hospital, Denmark, talks with Torie about his role as a neurologist, neurophysiologist, epileptologist, researcher, and lecturer, and how the research taking place today will change the world of PWE (People with Epilepsy) in the future, for the better.
CONNECT WITH SÁNDOR
• LinkedIn: https://www.linkedin.com/in/s%C3%A1ndor-beniczky-2a6a4a11
• Twitter: https://twitter.com/SBeniczky
• Facebook: https://www.facebook.com/profile.php?id=100014300773973
READ ABOUT SÁNDOR’S WORK
• ResearchGate: https://www.researchgate.net/profile/Sandor-Beniczky
• The Epilepsy Hospital: http://www.filadelfia.dk/en/epilepsihospitalet
• AARHUS University: https://pure.au.dk/portal/en/persons/sndor-beniczky(7080ac19-d0e8-494a-8a88-96de52d4e55d).html
• ILAE: https://www.ilae.org/sandor-beniczky
CHECK OUT THE YOUTUBE VIDEO WITH SÁNDOR
• YouTube: https://youtu.be/MRN0Yf836tY
CONNECT WITH TORIE
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/TorieRobinsonSpeaker
CHECK OUT TORIE’S YOUTUBE & BLOG
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY
https://www.torierobinson.com/contact
Meet Asst. Prof. Gabriele Lignani: the Principal Investigator, Senior Research Fellow, & Biotechnologist at the University for Neurology and Neurosurgery, Queen Square, London, and recent winner of the Harinarayan Young Neuroscientist Award 2021 for his research into Activity-dependent Gene Therapy for Intractable Epilepsy! Gabriele speaks with Torie about researching gene therapy for epilepsy and his journey into epilepsy research.
CONNECT WITH GABRIELE
LinkedIn: https://www.linkedin.com/in/gabriele-lignani-288b9023
Twitter: https://twitter.com/LignaniLab_UCL & https://twitter.com/gabrilignani
READ ABOUT GABRIELE’S WORK
Website: https://www.lignanilab.com
ResearchGate: https://www.researchgate.net/profile/Gabriele-Lignani
Rare Revolution interview: https://bit.ly/3reUJac
READ THE INTERVIEW WITH GABRIELE
https://www.torierobinson.com/blog/gabriele-lignani-gene-therapy
CONNECT WITH TORIE
Website: https://www.torierobinson.com
Twitter: https://twitter.com/torierobinson10
LinkedIn: https://www.linkedin.com/torierobinson
Facebook:https://www.facebook.com/TorieRobinsonSpeaker
CHECK OUT TORIE’S YOUTUBE & BLOG
YouTube: https://youtube.com/c/TorieRobinson
Blog: https://www.torierobinson.com/blog
Meet Dr. Gareth Morris, a neuroscientist at FutureNeuro, honorary lecturer at RCSI, and Editor of Epilepsy In English. We talk about his research into temporal lobe epilepsy, how he first got into and what attracted him to epilepsy research, and how much it means to him to hear from people with epilepsy! You’ll also hear a bit about his cool website and blog.
CONNECT WITH GARETH MORRIS
• LinkedIn: https://www.linkedin.com/in/gareth-morris
• Twitter: https://twitter.com/GarethMorris5
READ ABOUT GARETH’S WORK
• Website: https://www.epilepsyinenglish.ie
• ResearchGate: https://www.researchgate.net/profile/Gareth-Morris-3
• FutureNeuro: https://www.futureneurocentre.ie/people/gareth-morris
CHECK OUT THE YOUTUBE VIDEO WITH GARETH
• YouTube: https://www.youtube.com/c/TorieRobinson
CONNECT WITH TORIE
• Website:https://www.torierobinson.com
• Twitter:https://twitter.com/torierobinson10
• LinkedIn:https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/TorieRobinsonSpeaker
CHECK OUT TORIE’S YOUTUBE & BLOG
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY & INCLUSION
https://www.torierobinson.com/contact
Neuroscientist and genetic epilepsy researcher Dr. Omar Mamad tells us how he got into his work, his speciality - from Morocco to Ireland - via France, and how he is changing the world for those affected by the rare epilepsy CDKL5; step by step.
CONNECT WITH OMAR
• Website: https://www.omarmamad.com
• Twitter: https://twitter.com/MamadOmar5
• LinkedIn: https://www.linkedin.com/in/omar-mamad
• Facebook: https://www.facebook.com/omar.mamad
OMAR'S ASSOCIATE ORGANISATIONS
• FutureNeuro: https://www.futureneurocentre.ie
• RCSI: https://www.rcsi.com/dublin
• Epilepsy Sparks: https://www.epilepsysparks.com
• CDKL5UK:https://curecdkl5.org.uk
• CDKL5 Ireland: http://cdkl5.ie
UPCOMING CDKL5 ALLIANCE MEETING - 19 JUNE 2021
https://www.cdkl5alliance.org/cdkl5-events
CHECK OUT THE YOUTUBE VIDEO WITH OMAR
• https://www.youtube.com/watch?v=kXTXn1rWtBw&t=45s
CONNECT WITH TORIE
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/TorieRobinsonSpeaker
CHECK OUT TORIE’S YOUTUBE & BLOG
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY
https://www.torierobinson.com/contact
FutureNeuro & the Royal College of Surgeons in Ireland talk about epilepsy, epilepsy tech, patient empowerment, and their PiSCES Epilepsy Patient Portal work! We hear from a carer, researcher, nurse, and investigator who are all working towards bettering the lives of people affected by epilepsy.
FEATURING:
• Dr. Kevin Power, post-doc researcher at FutureNeuro
Find Kevin on Twitter: https://twitter.com/KevinPowerPhD1
• Maíre White, Advanced Epilepsy Nursing Practitioner, Beaumont Hospital
• Susan Dolan, Care Partner & Mam of a Person Living With Epilepsy
• Mary Fitzsimons, Principal Investigator at FutureNeuro & PiSCES
Find Mary on Twitter: https://twitter.com/swordsonsunday
PiSCES
• Pdf: https://www.futureneurocentre.ie/wp-content/uploads/2020/10/Pisces-Newsletter_Autumn-2020-KP.pdf
FUTURENEURO
• Website: https://www.futureneurocentre.ie
RCSI
• Website: https://www.rcsi.com
CONNECT WITH FUTURENEURO
• Website: https://www.futureneurocentre.ie
• Twitter: https://twitter.com/Futureneuro_ie
• Facebook: https://www.facebook.com/FutureNeuroCentre
• LinkedIn: https://www.linkedin.com/company/futureneuro
CHECK OUT THE YOUTUBE VIDEO WITH THE TEAM
• YouTube: https://www.youtube.com/watch?v=86-_odVwjmA&t=182s
CONNECT WITH TORIE
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/torierobinson10
CHECK OUT TORIE’S YOUTUBE & BLOG
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
Meet cannabis scientist, educator, and campaigner Dr. Callie Seaman - who also has epilepsy. Talking diagnosis, stripping during seizures, and treatments - including those derived from cannabis plants. Callie has a UK-licensed medical cannabis cultivation research facility and completed her Ph.D. focussing on Fertiliser Chemistry.
*CONNECT WITH CALLIE*
• LinkedIn: https://www.linkedin.com/in/dr-callieseaman
• Twitter: https://twitter.com/dr_CallieSeaman
• Website: https://aqualabs-uk.com
*CHECK OUT THE YOUTUBE VIDEO WITH CALLIE*
• YouTube: https://youtu.be/zRuaPbyAj4c
*CONNECT WITH TORIE*
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/torierobinso...
*CHECK OUT TORIE’S YOUTUBE & BLOG*
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
*HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY*
https://www.torierobinson.com/contact
Meet Learning Disabilities Nurse (with a specialisation in epilepsy) & CEO of Pretola Global Health Consulting, Tolu Olanyan. Torie and Tolu talk about how Tolu got into her profession and what she wants to achieve when it comes to epilepsy in LMIC.
CONNECT WITH TOLU OLANYAN
• Website: https://www.pretolaghc.net
• Twitter: https://twitter.com/Precious1Tolu
• LinkedIn: https://www.linkedin.com/in/tolu-olaniyan
• Facebook: https://www.facebook.com/tolu.precious.3
PRETOLA GLOBAL HEALTH CONSULTING
• Website: https://www.pretolaghc.net
• Twitter: https://twitter.com/PretolaGHC
• LinkedIn: https://www.linkedin.com/company/pretolaghc
• Facebook: https://www.facebook.com/PretolaGHC
• YouTube: https://www.youtube.com/channel/UCZLNzDX_xifBSv_BXIATakg
CHECK OUT TORIE’S BLOG
https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY
https://www.torierobinson.com/contact
CONNECT WITH TORIE
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/torierobinsonspeaker
• YouTube: https://www.youtube.com/c/TorieRobinson
Meet Dr. Jim Morrow, a former Neurologist from Northern Ireland, with whom we are talking about Sodium Valproate, aka Epilim, its feature in the UK Government's "Cumberlege Review", and why it has been called a "public health scandal" by some.
Sodium Valproate is a medicine commonly used to treat epilepsy (and bipolar actually) and has been around since the 1960s. You'll find it referred to mainly as Valproate in this podcast.
CHECK OUT JIM
• BMJ: https://pn.bmj.com/content/16/2/162
• Belfast Telegraph: https://www.belfasttelegraph.co.uk/news/health/belfast-doctor-who-earned-global-reputation-for-treating-epilepsy-found-he-had-condition-himself-36706294.html
• Epilepsy Action: https://www.epilepsy.org.uk/news/news/dr-jim-morrow-receives-special-recognition-award-outstanding-contribution-treatment
CHECK OUT THE YOUTUBE VIDEO WITH JIM
• YouTube: https://www.youtube.com/watch?v=xd1Jt12x27g&t=586s
CONNECT WITH TORIE
• Website:https://www.torierobinson.com
• Twitter:https://twitter.com/torierobinson10
• LinkedIn:https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/TorieRobinsonSpeaker
CHECK OUT TORIE’S YOUTUBE & BLOG
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY & INCLUSION
https://www.torierobinson.com/contact
Learn about what it's like to be a highly specialised paediatric clinical physiologist (often known as a neurophysiologist) - that person who does EEGs for children - and more! I interviewed the really cool Dr. Stuart Smith from Great Ormond Street Hospital for Children NHS Foundation Trust, London!
Stuart talks about how he makes children more relaxed and how parents can help their children chill during an EEG, psychosocial implications, his studies into epilepsy (his Ph.D.) at the Pal Lab at King's College London, and more!
CONNECT WITH STUART
• LinkedIn: https://www.linkedin.com/in/stuarteeg
• Twitter: https://twitter.com/Neurospindle
READ ABOUT STUART'S WORK
• WILEY: https://onlinelibrary.wiley.com/doi/10.1002/epi4.12468
• KCL: https://kclpure.kcl.ac.uk/portal/en/theses/a-longitudinal-study-of-brain-structure-and-function-in-rolandic-epilepsy-between-active-epilepsy-and-seizure-remission(ae6bffdb-31c6-4a17-904d-3eb377471e00).html
CONNECT WITH TORIE
• Website:https://www.torierobinson.com
• Twitter:https://twitter.com/torierobinson10
• LinkedIn:https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/TorieRobinsonSpeaker
CHECK OUT TORIE’S YOUTUBE & BLOG
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY & INCLUSION
https://www.torierobinson.com/contact
Meet Sammy Ashby and Jennifer Thorpe from SUDEP Action, learn how to minimise your risk of SUDEP, and better your life/that of the person you care about.
We mention brilliant leaders in the field including Dr. Rohit Shankar (MBE), Dr. Rhys Thomas, and Assistant Professor Arjune Sen!
CONNECT WITH SAMMY & JENNIFER
• LinkedIn: https://www.linkedin.com/in/sammyashby, https://www.linkedin.com/in/jennifer-thorpe-771989131
• Twitter: https://twitter.com/SammyatSUDEP, https://twitter.com/Jennifert_SUDEP
READ ABOUT SUDEP ACTION'S WORK
• Website: https://sudep.org
• Twitter: https://twitter.com/SudepAction
• LinkedIn: https://www.linkedin.com/company/sudep-action
• Facebook: https://www.facebook.com/SUDEPAction.org
• Instagram: https://www.instagram.com/sudepaction
CHECK OUT THE YOUTUBE VIDEO WITH SAMMY & JENNIFER
• YouTube: https://www.youtube.com/watch?v=de7wvAcoEOU&t=101s
CONNECT WITH TORIE
• Website: https://www.torierobinson.com
• Twitter: https://twitter.com/torierobinson10
• LinkedIn: https://www.linkedin.com/torierobinson
• Facebook: https://www.facebook.com/TorieRobinsonSpeaker
• Instagram: https://www.instagram.com/torierobinson10
CHECK OUT TORIE’S YOUTUBE & BLOG
• YouTube: https://www.youtube.com/c/TorieRobinson
• Blog: https://www.torierobinson.com/blog
HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY & INCLUSION
https://www.torierobinson.com/contact