Epilepsy Sparks Insights

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. ------------------------------------------

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! ------------------------------------------

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.  ------------------------------------------

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. ------------------------------------------

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! ------------------------------------------

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! ------------------------------------------

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! ------------------------------------------

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! ------------------------------------------

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! -----------------------------------------

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! ------------------------------------------

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. ------------------------------------------

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. ------------------------------------------

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. ------------------------------------------

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. -----------------------------------------

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. -----------------------------------------

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. ------------------------------------------

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. ------------------------------------------

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. ------------------------------------------

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. ------------------------------------------

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. ------------------------------------------

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. ------------------------------------------

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 -----------------------------------------

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.. -----------------------------------------

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! -----------------------------------------

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:

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! -----------------------------------------

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! -----------------------------------------

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. ------------------------------------------

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! ------------------------------------------

Physicist Sjoerd Vos shares his research in neuroimaging; aiming at decreasing language decline caused by temporal lobe resections! -----------------------------------------

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! ------------------------------------------

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. -----------------------------------------

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! ------------------------------------------

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! ------------------------------------------

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

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.  -----------------------------------------

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. -----------------------------------------

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 

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 

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. ------------------------------------------

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

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”

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

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  ------------------------------------------

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. ------------------------------------------

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.  ------------------------------------------

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. ------------------------------------------

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. -----------------------------------------

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. ------------------------------------------

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. ------------------------------------------

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. ------------------------------------------