Torie leads: Epilepsy Sparks Insights

New interviews every Thursday. See the latest podcast here!

Watch interviews with inspiring clinicians, scientists, researchers & geneticists in the field of epilepsy.
**NOT FOR CLINICAL OR PATIENT DECISION MAKING**

Available on YouTube and your favourite podcast app.

For the most recent episodes go to the Epilepsy Sparks Insights page here: Epilepsy Sparks Insights

#36 AHC: The Genetic Epilepsy That Doesn't Yet Make Sense - Alexis Arzimanoglou & Rosaria Vavassori - EpiCARE, EU - 27 Jan 2022

Today we talk about the rare epilepsy Alternative Hemiplegia of Childhood with Prof. Alexis Arzimanoglou and Rosaria Vavassori. Alexis is a peadiatric and adult neurologist and lead of the European Reference Network for EpiCARE, and Rosaria is the founder of AHC Europe, mum to a son with the rare genetic epilepsy AHC and part of the EpiCARE European Patient Advocacy Group. Both tell us about their work to improve the lives of people affected by the shockingly rare AHC and how far things have come over the past 10 years!

Also available on video (YouTube): Alexis-Arzimanoglou-Rosaria-Vavassori

#35 Chronic and Acute Conditions and Symptoms in People With Epilepsy - Wyatt Bensken - Case Western Reserve University, US - 20 Jan 2022

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.

Also available on video (YouTube): Wyatt Bensken

#34 Sex: When A Person Has Epilepsy - Charlotte Lawthom - Swansea University, Wales, UK - 13 Jan 2022

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.

Also available on video (YouTube): Charlotte Lawthom

#33 Seizure Detection Devices Can Improve People’s Lives - Julie Nys - Byteflies, Belgium - 06 Jan 2022

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.

Also available on video (YouTube): Julie Nys

#32 Neuropsychology in Epilepsy Surgery - Sallie Baxendale - Hospital for Neurology & Neurosurgery, UCL, UK - 23 Dec 2021

Today we are talking to Dr. Sallie Baxendale, a consultant neuropsychologist and part of the Epilepsy Surgery programme at 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.

Also available on video (YouTube): Sallie Baxendale

#31 Fruits for seizures? A potential treatment strategy for epilepsy? - Farooq Shaikh - Monash University Malaysia - 16 Dec 2021

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.

Also available on video (YouTube): Farooq Shaikh

#30 Genetic epilepsies: improving the transition from peadiatric to adult care - Danielle Andrade - University of Toronto, Canada - 09 Dec 2021

Meet 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. 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.

Also available on video (YouTube): Danielle Andrade

#29 Children with epilepsy & their quality of life - Alice Winsor - King's College London, UK - 02 Dec 2021

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. IMPARTS is a pre-established initiative run across Kings Health Partners; aiming to bridge together physical and mental healthcare. However, this is the first time it shall be rolled out amongst young people with epilepsy. Alice is near completion of her Ph.D. in the sleep, neurodevelopmental characteristics, and quality of life in children with epilepsy. Feel free to contact Alice (see below) to learn more about involvement!

Also available on video (YouTube): Alice Winsor

#28 Blackouts caused by epilepsy, NEAD/PNES, or fainting? - Nathan Pevy - Sheffield Uni, UK - 25 Nov 2021

Meet 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!

Also available on YouTube: Nathan Pevy

#27 Whole Exome Sequencing for children with rare epilepsies - Prof. Cathy Abbot - Abbott Lab, Edinburgh University, UK - 18 Nov 2021

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!

Also available on YouTube: Cathy Abbott

#25 Antibodies attacking the brain causing epilepsy - Dr. Sukhi Wright - Aston University & Birmingham Children’s Hospital, UK - 04 Nov 2021

Today we talk to Dr. Sukhe 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. Sukhe 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.

A video of the interview: Sukhe Wright

#24 Children’s epilepsy surgery service - Aswin Chari - Great Ormond Street Hospital & UCL, UK - 28 Oct 2021

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.

A video of the interview: Aswin Chari

#23 Children’s epilepsy surgery service - Caroline Scott - Birmingham Women’s & Children’s NHS Trust - 21 Oct 2021

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.

A video of the interview: Caroline Scott

#22 Dravet Syndrome - a rare epilepsy - Elena Muñoz & José Aibar - Dravet Foundation EU - 14 Oct 2021

José and Elena talk to Torie 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.".

A video of the interview: Elena Muñoz & José Aibar

#21 Mitochondrial epilepsies, quality of life, and evolution - Dr. Rhys Thomas - Newcastle Hospitals NHS Foundation Trust - 07 Oct 2021

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. Dare one say it, but as well as topics including mitochondrial epilepsies, quality of life, and research, sex was brought up in conversation!

Also available on YouTube: Rhys Thomas

#20 Wearable Seizure Detection devices - user experience study - Prof. Sándor Beniczky - The Epilepsy Hospital, AARHUS University, Denmark - 30 Sep 2021

Sándor Beniczky is a neurophysiologist, neurologist, and epileptologist from AARHUS University and The Epilepsy Hospital, Denmark, working to improve seizure detection devices, and you can have your say through a questionnaire (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 about 5 mins!

Also available on YouTube: Sándor Beniczky

#19 Improving epilepsy care for children with epilepsy - Dr. Colin Dunkley - Sherwood Forest Hospitals NHS Foundation Trust, UK - 23 September 2021

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.

Also available on YouTube: Colin Dunkley

#18 Epilepsy research - by a person with epilepsy
16 September 2021 -Christin Godale
University of Cincinnati, US

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 used to be a model!

YouTube: Christin Godale
Podcast: Christin Godale

#17 The crucial role of an Advanced Nursing Practitioner in epilepsy
09 September 2021 - Javier Peña Ceballos
Beaumont Hospital, Dublin, Republic of Ireland

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!

YouTube: Javier Peña Ceballos
Podcast: Javier Peña Ceballos

#16 Developing a preconception care pathway for women with epilepsy
02 September 2021 - Prof. Rohit Shankar
Cornwall Partnerships NHS FT, The Royal College of Psychiatrists, South West Division, UK

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. 

YouTube: Rohit Shankar
Podcast: Rohit Shankar

#15 Developing a preconception care pathway for women with epilepsy
26 August 2021 - Mona Heiland
The Royal College of Surgeons in Ireland, FutureNeuro

Meet Mona Heiland, a final year Ph.D. student who under the supervision of Prof David Henshall is studying the effects of cannabidiol (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. 

YouTube: Mona Heiland
Podcast: Mona Heiland

#14 Developing a preconception care pathway for women with epilepsy
19 August 2021 - Dr. Janine Winterbottom
The Walton Centre NHS Foundation Trust in Liverpool, UK

Meet Dr. Janine Winterbottom, an Advanced Nurse Specialist in Epilepsy and Independent Nurse Prescriber who 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.

YouTube: Janine Winterbottom
Podcast: Janine Winterbottom

#13 What causes epilepsy? That is the question
12 August 2021 - Prof. Gavin Woodhall
Institute for Health and Neurodevelopment at Aston University, Birmingham, UK

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)?”

YouTube: Gavin Woodhall
Podcast: Gavin Woodhall

#12 Developing epilepsy through tapeworms
05 August 2021 - Prof. Ley Sander
National Hospital for Neurology & Neurosurgery, London, UK. SEIN, WHO

Professor Ley Sander tells us about his passion for helping people affected by epilepsy, his work today internationally, and some of the clear obstacles when it comes to minimising epilepsy cases - such as clean water.

YouTube: Ley Sander
Podcast: Ley Sander

#11 Beautiful neuroimaging and epilepsy research
29 July 2021 - Prof. Simon Keller
The BRAIN Lab, Liverpool University, UK

Professor Simon Keller tells us about his neuroimaging work (mainly using MRIs) his passion for helping those affected by epilepsy, how he got into his work in the first place, and his cool images!

YouTube: Simon Keller
Podcast: Simon Keller

#10 Motivation as an epileptologist and neurophysiologist
22 July 2021 - Prof. Sándor Beniczky
The Epilepsy Hospital, AARHUS University, Denmark

Professor Sándor Beniczky from The Epilepsy Hospital and AARHUS University, Denmark, talks about his role as an epileptologist, neurophysiologist, 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.

YouTube: Sándor Beniczky
Podcast: Sándor Beniczky

#09 Epilepsy Gene Therapy by an epilepsy research fellow
15 July 2021 - Asst. Prof. Gabriele Lignani
Lignani Lab, UCL, UK

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 in his lab and his journey into epilepsy research.

YouTube: Gabriele Lignani
Podcast: Gabriele Lignani

#08 Temporal lobe epilepsy research from a scientist, epilepsy researcher & editor
08 July 2021 - Dr. Gareth Morris
FutureNeuro, RCSI, Ireland

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 the arena 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.

YouTube: Gareth Morris
Podcast: Gareth Morris

#07 Researching genetic epilepsies - particularly CDKL5
28 May 2021 - Dr. Omar Mamad
FutureNeuro, RCSI, Ireland

Neuroscientist and genetic epilepsy Research Fellow Dr. Omar Mamad tells us how he got into his work, his specialty - from Morocco to Ireland - via France, and how he is changing the world for those affected by the rare epilepsy CDKL5; step by step.

YouTube: Omar Mamad
Podcast: Omar Mamad

#06 Individualised Services & Care in Epilepsy
26 May 2021 - Dr. Kevin Power, Maíre White, Mary Fitzsimons, & Susan Dolan
FutureNeuro, RCSI, Ireland

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 an invaluable mam & care partner Susan, Kevin Power, post-doc researcher, Maíre White, Advanced Epilepsy Nursing Practitioner, and Mary Fitzsimons, Principal Investigator; who are all working towards bettering the lives of people affected by epilepsy. We hear from the invaluable mam & care partner Susan too!

YouTube: PiSCES, FutureNeuro, RCSI
Podcast: PiSCES, FutureNeuro, RCSI

#05 A cannabis scientist with epilepsy
17 June 2021 - Dr. Callie Seaman
Aqualabs Ltd, UK

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.

YouTube: Callie Seaman
Podcast: Callie Seaman

#04 Epilepsy in Low-Middle Income Countries
10 Jun 2021 - Tolu Olaniyan
Pretola Global Health Consulting, UK

This week, Torie Robinson interviews Learning Disabilities Nurse (with a specialisation in epilepsy) & CEO of Pretola Global Health Consulting, Tolu Olaniyan. They talk about how Tolu got into her profession and what she wants to achieve when it comes to epilepsy in LMIC.

YouTube: Tolu Olaniyan
Podcast: Tolu Olaniyan

#03 Sodium Valproate debacle - history & managing risk
05 Jan 2021 - Dr. Jim Morrow
Former neurologist and epilepsy patient, Ireland

Torie interviews Dr. Jim Morrow, a former Neurologist who played and continues to play a key part in the UK Government's "Cumberlege Review" regarding the Sodium Valproate/Epilim debacle. Jim is very cool and despite the key topic, both have a real giggle - despite the fact, that Jim also has epilepsy…

YouTube: Jim Morrow
Podcast: Jim Morrow

#01 Sudden Unexpected Death in Epilepsy
02 Oct 2020 - Sammy Ashby & Jennifer Thorpe
SUDEP Action, UK

Sammy Ashby & Jennifer Thorpe from SUDEP Action speak to Torie about SUDEP risks, studies, and tell us what can be done to minimise risk. There’s involvement from families, medical professionals, researchers, and scientists in their research and they speak of what the next 1-5 years hold regarding the organisation. SUDEP Action provide support for families affected by SUDEP for as long as they need it.

YouTube: SUDEP Action
Podcast: SUDEP Action

#00 Neuroimaging research into epilepsy & sleep
17 Sep 2020 - Prof. Andy Bagshaw
University of Birmingham, UK

Torie Robinson interviews Scientist Prof. Andy Bagshaw, leader of the Multimodal Integration Group (MIG) at the University of Birmingham, UK, about his research into epilepsy and sleep, how he remains motivated, and how things have changed in neuroscientific research over the years.

YouTube: Andrew Bagshaw