Epilepsy Sparks Insights

Revolutionising Epilepsy Perceptions & Care in Pakistan - Dr. Zarine Mogal

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. 
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🔗 Website & more about Zarine: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/zarine-mogal-epilepsy-pakistan-stigma-treatment-gap 
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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 
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Advancing Mental Health Research Through GALENOS - Andrea Cipriani

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.
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🔗 Website & more about Andrea: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/andrea-cipriani-galenos-mental–health-research-outcomes-psychiatry 
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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 
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Epilepsy & Suicide: Breaking The Silence - Andrea Cipriani

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!
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🔗 Website & more about Andrea: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/andrea-cipriani-suicide-lived-experience-biopsychosocial-model-care
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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 
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Decoding Genetic Epilepsy - Sam Berkovic

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!
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🔗 Website & more about Sam: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/sam-berkovic-genetic-epilepsy-developments 
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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 
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How To Minimise SUDEP Risk - Sanja Gluscevic

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!
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🔗 Website & more about Sanja: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/sanja-gluscevic-minimising-sudep-risk 
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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 
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Epilepsy and Mental Health: Anxiety, Depression, Psychosis - Gus Baker

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!
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🔗 Website & more about Gus: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/gus-baker-neuropsychology-anxiety-depression-psychosis 
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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 
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You'll Only Need One Brain Scan For Your Epilepsy! - Graeme Jackson

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!
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🔗 Website & more about Graeme 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/graeme-jackson-australian-epilepsy-project-mri
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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
https://www.epilepsysparks.com/glossary 
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Epilepsy Is More Than Seizures! - Matthias De Wachter

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!
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🔗 Website & more about Matthias 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/matthias-de-wachter-morbidities-kcnq2-kcnq3-dravet 
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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
https://www.epilepsysparks.com/glossary 
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Empowering People With An Epilepsy - In Rural India - Bindu Menon

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.
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🔗 Website & more about Bindu 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/bindu-menon-epilepsy-empowerment-india
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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
https://www.epilepsysparks.com/glossary 
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DANCEing: Beyond Seizures: Supporting Caregivers! - Simona Giorgi, Dravet Foundation EU, Spain

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.
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🔗 European Dravet Syndrome Conference 2025
https://www.epilepsysparks.com/conferences/european-dravet-syndrome-conference-madrid
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🔗 Website & more about Simona: 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/simona-giorgi-dance-dravet-epidemiology-support 
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Chapters 📖
00:00 Intro
00:00 Meet Simona & Dravet Syndrome Foundation Spain
02:48 Research Initiatives and Collaborations
06:07 Understanding Epidemiological Studies
08:58 Tools for Caregivers and Patients
11:57 Awareness and Support for Families
15:04 Future Directions
00:00 Conclusion & Thanks
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Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 
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#rareepilepsy #Dravet #epidemiology #neuropsychiatric #carer #caregiver