Dravet Syndrome UK and Epilepsy Research Institute partner to invest in two future leaders in Dravet Syndrome and epilepsy research

As part of the Epilepsy Research Institute’s 2024 Research Awards, the DSUK has co-funded two Fellowship projects with the Epilepsy Research Institute to develop future leaders investigating Dravet Syndrome and epilepsy. 

During National Epilepsy Week, it was announced that Dr Lisa Clayton and Dr Jenna Carpenter, both based at the Queen Square Institute of Neurology, University College London, were to be awarded funding for these collaborative projects.

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.

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.

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”.

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.”