As part of our 2024 Research Awards, the Epilepsy Research Institute is delighted to co-fund two Fellowship projects with Dravet Syndrome UK (DSUK) to develop future leaders investigating Dravet Syndrome and epilepsy.
During National Epilepsy Week, it was announced that Dr Jenna Carpenter and Dr Lisa Clayton, both based at the Queen Square Institute of Neurology, University College London, were to be awarded funding for these collaborative projects.
Dravet Syndrome is a rare neurological condition that affects around one in every 15,000 people in the UK. DSUK explains the condition encompasses treatment-resistant epilepsy, intellectual disability and a spectrum of associated conditions, which may include autism, ADHD, behaviours that challenge and difficulties with speech, mobility, eating and sleep.
Understanding autonomic dysfunction in Dravet syndrome
Dr Lisa Clayton’s project explores a poorly understood yet potentially significant aspect of Dravet Syndrome, known as dysautonomia. While Dravet Syndrome is a lifetime condition with multiple debilitating comorbidities, clinical research has often focused on seizures during childhood. Dysautonomia is a comorbidity that affects bodily regulation of internal organs and processes such as heart rate, body temperature, and digestion. Centering on young people and adults with Dravet Syndrome, this study will help develop effective methods for screening for dysautonomia, predict who may develop it, and importantly try and find ways to prevent, limit, or alleviate problems related to dysautonomia.
Developing a gene therapy for epilepsy in Dravet syndrome
Dr Jenna Carpenter’s project aims to develop a groundbreaking gene therapy for Dravet Syndrome. This innovative therapy would offer a permanent treatment, uniquely designed to adapt dynamically to the patient’s developing brain over their lifetime. Beyond stopping seizures, this on-demand therapy could significantly alleviate other debilitating aspects of the condition. By integrating cutting-edge technologies into their research, the team are setting a new standard in treatments for Dravet Syndrome and other rare genetic epilepsies.
Rosemarie Pardington, Epilepsy Research Institute Chief Executive, said: “We are thrilled to partner with our friends at Dravet Syndrome UK to fund these two pioneering and crucial projects, which could have a profound positive impact for people affected by Dravet Syndrome and epilepsy. This is a great example of collaboration that evidences how working together can radically advance research into epilepsy.”
Galia Wilson, Dravet Syndrome UK Chair, said: “We are incredibly proud to announce these two unique projects in collaboration with the Epilepsy Research Institute. Both engage with important, unexplored areas of research and have the potential to contribute vital new insights into Dravet Syndrome and its future treatments, making a real difference to the lives of families affected by this rare and complex epilepsy. We want to say a huge thank you to all our supporters at DSUK, this research investment is only possible due to your amazing fundraising and generosity”.
About the Epilepsy Research Institute
The Epilepsy Research Institute serves as the central hub for the epilepsy research community. Their mission is to radically advance research into epilepsy for the 1 in 100 people living with the condition.
The Institute aims to increase understanding of the causes and mechanisms of the epilepsies and associated conditions to accelerate research innovations in prevention and treatment. To strengthen the epilepsy research ecosystem, they drive strategic investment and develop partnerships and collaborations. These are between academia, the NHS, industry, funders, patient groups, people with epilepsy and their support networks. Crucially, they actively involve people affected by epilepsy to shape how research is designed and delivered.
A life free from epilepsy is possible. But only through research.
About Dravet Syndrome UK
Dravet Syndrome UK (DSUK) is an independent charity dedicated to improving the lives of those affected by Dravet Syndrome through support, education and medical research.
We do this by:
- Supporting families affected by Dravet Syndrome emotionally, practically, and financially.
- Raising awareness and understanding of Dravet Syndrome among medical professionals
- Funding medical research focused on the unmet needs of families living with Dravet Syndrome
- Dravet Syndrome UK is supported by a world class Medical Advisory Board, comprising eight leading experts in Dravet Syndrome, and chaired by Professor Helen Cross, President of the ILAE, and Prince of Wales’s Chair of Childhood Epilepsy at UCL-Institute of Child Health, Great Ormond Street Hospital for Children, London. Find out more about our Medical Advisors here.
- Visit www.dravet.org.uk for more information about Dravet Syndrome and how the charity brings hope to families living with this condition.