Epilepsy Sparks Insights

Neurosurgery prep: EEGs & video telemetry - Caroline Scott

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

Dravet Syndrome - a rare epilepsy - Elena Muñoz & José Aibar

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

Mitochondrial epilepsies, quality of life, and research - Dr. Rhys Thomas

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

Have your say - user experience using wearable devices for seizure detection - Prof. Sándor Beniczky

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

Improving care for children with epilepsy - Dr. Colin Dunkley

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

Being an epilepsy researcher with epilepsy - Christin Godale

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

The crucial role of an Advanced Nursing Practitioner in Epilepsy - Javier Peña Ceballos

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

Supporting people with Intellectual Disability & Epilepsy - Prof. Rohit Shankar, MBE

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/

The effects of cannabidiol (CBD) on microRNA expressions in epilepsy - Mona Heiland

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

Developing a preconception care pathway for women with epilepsy - Dr. Janine Winterbottom

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: epilepsypreconceptionstudyCall the research team (UK): 0151 556 3721Email 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