John and Nancy Bettelley

John and Nancy Bettelley from Blackheath, south-east London, knew that when they lost their son  Andrew, 29, following a nocturnal seizure in March 2007, they would have to do everything they could to stop another family suffering the same tragedy.

Andrew had been diagnosed with epilepsy when he was 11, and although there had been difficulties getting his medication right, his seizures were largely controlled. Andrew lived independently, near to his family home. John recalls: “Andrew was a happy and well-liked young man. He worked, liked socialising and was very keen on his tennis. We couldn’t have predicted what would happen. Despite ongoing research, the risk factors of a person dying from epilepsy, whether from SUDEP or other epilepsy-related causes, are only partly understood and not necessarily well communicated.”

Andrew’s death has been devastating for John, Nancy and his sister Nicole. They decided that they wanted to put all their efforts into supporting research into epilepsy, and set up the Andrew Bettelley Memorial Fund with Epilepsy Research UK. Over the last seven years they have fundraised tirelessly on behalf of the charity, raising many thousands of pounds (well over £56,000 at the last count) helped by the tremendous support they have received from a great number of family and friends. This has contributed to a dedicated memorial fund research project each year.

“For us, research is the only way to go,” said John. “There have been significant medical advances in helping some kinds of epilepsy; gene therapy is very promising, and we must continue to look for more breakthroughs which will help prevent the same tragedy happening to others.

John and Nancy have fundraised through activities such as: tennis tournaments; bridge days; Christmas raffles; lunch and drink parties; concerts; dinner and entertainment; hat, handbag and jewellery sales; National Epilepsy Week activities; sponsored school readathon and marathon entries; supermarket collections. They also supported ERUK on the 2011 Gala Ball committee, and Nancy is a regular ERUK volunteer for Cards for Good Causes .

They take great care to organise activities that their friends will enjoy, and many have become much looked forward to annual events. They also collaborate sometimes with fundraisers for other locally supported charities, pooling resources and sharing the proceeds – a great way to spread the workload and attract a wider audience. In all they do they seek to raise awareness and understanding of epilepsy in their local community.

Our thanks go to John and Nancy for their fantastic support of our research over the last seven years and for continuing to look ahead with their fundraising, and to their family and friends for their continuing generosity. Their next event is a Toy Sale on 29 November in collaboration with Age Exchange, Blackheath.