Epilepsy Sparks Insights

How Seizure Detection Devices Can Improve Lives: EpiCare@Home - Julie Nys

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 medicinePeople 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

Neuropsychology in Epilepsy Surgery - Sallie Baxendale

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.comTwitter: https://twitter.com/torierobinson10LinkedIn:https://www.linkedin.com/torierobinsonInstagram: https://www.instagram.com/torierobinson10 Facebook:https://www.facebook.com/TorieRobinsonSpeaker 

Fruits for seizures? A potential treatment strategy for epilepsy? - Farooq Shaikh

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.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

Genetic epilepsies: improving the transition from peadiatric to adult care - Danielle Andrade

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-andradeUni of Toronto: http://www.neuroscience.utoronto.ca/faculty/list/andrade.htm & https://facdir.deptmedicine.utoronto.ca/Detail.aspx?id=1630&showdivisiontitle=1&division_id=N04ResearchGate: 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.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

Children with epilepsy & their quality of life - Alice Winsor

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-WinsorPubMed: https://pubmed.ncbi.nlm.nih.gov/?term=Winsor+AA&cauthor_id=33561679Orcid: https://orcid.org/0000-0001-6689-2425IMPARTS: https://imparts.orgKing’s Health Partners: https://www.kingshealthpartners.orgKing’s College Hospital: https://www.kch.nhs.ukRichards Lab: https://carolinerichards.net/peoplePal 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).htmlEpilepsy Sparks: https://www.epilepsysparks.com/blog/sleep-disruption-in-childhood-epilepsy-alice-winsor **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

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