Epilepsy is a chronic disorder of the brain affecting around 50 million people worldwide. The estimated proportion of the general population with active epilepsy (at a given time is between 4 and 10 per 1000 people.
FutureNeuro, the SFI Research Centre for Chronic and Rare Neurological Diseases, is hosted by RCSI. The centre’s academic and clinical partners are world-class leaders in epilepsy research who are committed to improving outcomes and wellbeing which can transform the lives of patients with epilepsy.
Epilepsy is of the world’s oldest recognised conditions, with written records dating back to 4000 BC. Today, researchers at RCSI and around the world continue to work to understand the condition and design interventions that will help to reduce the impact it has on people’s lives.
To educate, equip and empower people living with epilepsy to engage and become involved with research, the team at FutureNeuro have committed to explaining complex epilepsy publications in plain English. Their work is bridging the gap between people living with the condition, their caregivers, clinicians and neuroscientists.
In 2018, as part of FutureNeuro’s public engagement and outreach programme, Dr Gareth Morris and the team started the Epilepsy in English blog where researchers offer clear, accessible and unbiased information about the most new and exciting advances in epilepsy research, presented in a way that anybody can understand. To date, FutureNeuro researchers have written twelve lay-versions of recent developments in research covering topics from seizure prediction to brain-clocks with invited contribution from the wider research community, reaching approximately 2,000 unique visitors.
Building on this success, the team have developed a series of workshops aimed at people living with epilepsy and their families, patient advocacy organisations, the FutureNeuro clinical and research community and members of the public.
The workshops were co-designed together with Epilepsy Ireland, DCU PPI Ignite and a person living with epilepsy. They were delivered by 14 FutureNeuro team members including Centre Director, Prof. David Henshall, Co-PIs, the wider research team along with five members of the clinical care network and three patient advocates.
The workshops addressed temporal lobe epilepsy, sudden unexpected death in epilepsy (SUDEP), gene therapy and using technology for self-monitoring.
FutureNeuro and Epilepsy Ireland secured €42,000 SFI Discover funding to develop the workshop series and the centre now plans to extend the workshop model to other disease areas.
RCSI is committed to achieving a better and more sustainable future through the UN Sustainable Development Goals.