Epilepsy Action and Dravet syndrome UK have awarded a research grant to researchers at the UK’s Institute of Neurology. The grant is to fund research into Dravet syndrome, a rare form of childhood epilepsy. The money was given by TeamMAX, a fund set up in memory of Max Miller, who had Dravet syndrome, and died as a result of SUDEP (Sudden Unexpected Death in Epilepsy) in June 2011.
Most cases of Dravet syndrome are due to problems with one particular gene, called SCN1A. The research will investigate the role that this faulty gene can play on heart rhythm. The research will determine if the gene in the brain responsible for Dravet syndrome also causes problems with the heart, particularly when children are unwell. The researchers suggest that these problems could be the cause of the increased risk of SUDEP. If they are correct, this study could play a part in minimising the risk of SUDEP in the future, both when children are well and at times of illness.
TeamMax was set up by Max’s mother, Gail Miller. The group of friends, colleagues and family raise money to support research into cures for epilepsy. They have raised over £30,000 to fund the study.
Dravet syndrome is a very rare form of childhood epilepsy. Out of 500 children with epilepsy, only one or two children are likely to have this form of epilepsy. Dravet syndrome is resistant to most epilepsy medicines. Children with the condition need to be cared for throughout their lives. They are also at an increased risk of premature death, often SUDEP. SUDEP is where a person with epilepsy dies suddenly and unexpectedly, and no obvious cause of death can be found.
Margaret Rawnsley, research officer at Epilepsy Action, said: “We are delighted to be collaborating with Dravet Syndrome UK in funding this important study. We are confident that the results will contribute to our understanding of the causes of SUDEP. We would like to thank Gail for making it possible. It is a fantastic tribute to Max.”