Picture of Joe sitting on couch

The Power of research – Joint Research Reception

On the 21st May we hosted a Joint Research Event, with Epilepsy Research Institute UK, in celebration of National Epilepsy Week and the Promise of Epilepsy Research. During the event, we reflected on some key developments within our research programme whilst looking towards the future and the promise that epilepsy research holds in improving the lives of all those affected by epilepsy. You can find a summary of our talks below.

Finding community in epilepsy: Joe’s story

We were delighted to be joined at the Joint Research Reception by Joe Paternoster. Joe has been supporting Young Epilepsy for many years, first in his role as a young rep and more recently a young trustee. 

During his presentation Joe reflected on his epilepsy journey, as well as highlighting the importance of finding community in epilepsy.  Joe’s closing statement perfectly depicts just how important this is:

This isn’t just me saying how great Young Epilepsy are (though they are fantastic) for facilitating these communities, but more for me to stress how important these outlets for young people with epilepsy are. When medication and treatments aren’t working, when research doesn’t yet have the answers, there needs to be something that we can rely on – for me, that something is each other.

Stay tuned for a full recording of the talk in the coming days! 

You can find Joe on Instagram as @captain_epilepsy

If you are interested in becoming a young rep you can find out more here

The Promise: How can research support the mental health of children and young people with epilepsy? 

Dr Sophie Bennett & Millie Wagstaff presented exciting work which demonstrates how research can support the mental health of children and young people with epilepsy.

Dr Sophie Bennett is Senior Lecturer in Clinical Psychology at the Institute of Psychiatry, Psychology & Neuroscience, King’s College London and Honorary Associate Professor at the UCL Great Ormond Street Institute of Child Health, where she works on the Mental Health Intervention for Children with Epilepsy (MICE) research programme. Dr Bennett’s main research interests are in the mental health of children with Long Term Conditions including epilepsy, and in ways to increase access to evidence-based interventions for mental health difficulties in children and young people and their families. 

Millie is a third-year PhD student within the UCL Great Ormond Street Institute of Child Health. Her PhD involves examining the psychiatric and neurodevelopmental comorbidities associated with epilepsy. Millie has a background in data science and psychology and is particularly interested in the mental health of children with physical health conditions.

Together, Millie & Sophie, outlined what the mental health needs of children and young people with epilepsy are, before presenting the exciting findings of Mental Health Intervention in Childhood Epilepsy (MICE) project. 

Led by UCL, the MICE team worked with health professionals, parents, children and young people to modify existing National Institute for Health and Care Excellence (NICE) recommended treatments for common mental health disorders so that the treatment met the special mental health needs of young people with epilepsy. The MICE project recruited a total of 334 participants, 166 of whom received the MICE intervention and 168 received the usual treatment for mental health problems in epilepsy. The treatment consisted of a series of session delivered either to the young person directly or via their caregiver. 

The results of the trial have been very promising, with young people receiving the MICE treatment having significantly fewer mental health difficulties than those who received treatment as usual at both 6 and 12 months.

Overall, this was a hugely insightful talk into how we can utilise the power of research to improve mental health support for children and young people with epilepsy.

If you want to find out more about the Mental Health in Childhood Epilepsy project, you can do so here.

The Priorities: Our Vision for future focussed research: A Q/A 

Dr Lara Carr, Dr Amy McTague, Dr Christine Embury 

To finish, Dr Lara Carr hosted a facilitated Q/A with Dr Amy McTague and Dr Christine Embury. The purpose of the Q/A was to look forwards and consider how research can continue to improve the lives of peoples affected by epilepsy and crucially what are some of the key priority areas which can lead to improvements in diagnostics, treatments, and support. 

To do this, Lara Carr, was joined by Dr Christine Embury and Dr Amy McTague to discuss just one example of a key topic area from our understanding childhood epilepsies and outstanding treatments research workstreams. 

Dr Amy McTague is a Principal Research Fellow at the UCL Great Ormond Street Institute of Child Health and Honorary Consultant Paediatric Neurologist at Great Ormond Street Hospital, London. Following training in paediatric neurology, Amy completed an MRC-funded PhD in the genetics of early onset epilepsy in the Kurian lab in 2018. After award of an MRC Clinician Scientist Fellowship, Amy started her group at the ZCR in the Molecular Neurosciences section in 2020. Amy is PI of an international study of rapid whole genome sequencing for epilepsy, a joint investigator for several epilepsy gene/RNA therapy trials and is investigating mechanisms and potential therapies using novel disease models including 3D stem-cell derived organoids. Given Dr McTague’s vast experience in genetics, the Q/A began by considering our understanding childhood epilepsies workstream, where the potential of genomics in improving care for children and young people with epilepsy was discussed. 

The discussion then moved to a discussion with Dr Christine Embury on the promise of OPM-MEG which falls within our final workstream, outstanding treatments. Dr Embury is a postdoctoral researcher at Young Epilepsy working with the OPM-MEG examining neurophysiological activity in children and young people with epilepsy. She received her PhD training in cryo-MEG at the University of Nebraska Omaha under the supervision of Dr. Tony Wilson, primarily examining the impact of diabetes on the brain, but has worked with participants with and without disorders across the lifespan. She has over 40 publications with more than 500 citations. Again, this was a very fruitful and exciting discussion. If you wish to find out more regarding our OPM-MEG, you can find that here. 

Overall, the event was an overriding success, celebrating the power of research as we reflected on present developments, as well as looking forwards to the promise that epilepsy research holds in improving the lives of all those affected by epilepsy. 

If you wish to find out more about our research programme, you can find our latest Research and Impact Report here