Epilepsy Sparks Insights

Blackouts caused by epilepsy, NEAD/PNES or fainting? - Nathan Pevy

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/nathanpevySheffield 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.comTwitter: https://twitter.com/torierobinson10LinkedIn: https://www.linkedin.com/torierobinsonFacebook: https://www.facebook.com/TorieRobinsonSpeaker **CHECK OUT TORIE’S YOUTUBE & BLOG**YouTube: https://www.youtube.com/c/TorieRobinsonBlog: https://www.torierobinson.com/blog**HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY**https://www.torierobinson.com/contact

Benefits of Whole Exome Sequencing re the genetic epilepsies - Prof. Cathy Abbott

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

Genetic epilepsies - improving the outlook - Dr. Emma Palmer

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

Antibodies attacking the brain causing epilepsy - Dr. Sukhvir Wright

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

An academic neurosurgical trainee - Aswin Chari

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=ACHAB77ResearchGate: https://www.researchgate.net/profile/Aswin-ChariBrainbook: 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

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