By Harry Mottram: The Purple Ball commemorates the life of Johdi Russell from Cheddar – organised by her family and friends – and raises cash for SUDEP Action – the charity dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death in Epilepsy.

Johdi Russell was just 17 when she suddenly died in October 2017. In a BBC article by Emma Elgee written at the time Johdi’s mum Tanya said: “Johdi was amazing and absolutely hilarious, she was one of those girls who always went above and beyond for people. I always describe her as like sunshine on a rainy day.”

Emma wrote: “Since then Mrs Russell, who also has epilepsy, has campaigned to change processes in hospitals and GP surgeries to make sure families with children with epilepsy are informed about SUDEP. She also hosts a yearly ball to raise money for SUDEP charities and support other bereaved families.”

SUDEP is a rare condition which affects around one in every 1,000 adults with epilepsy each year. According to SUDEP Action, the cause of SUDEP is not yet known, with researchers investigating a range of possibilities such as the effect of seizures on breathing and the heart.

Their services include bereavement support, counselling, help with understanding the inquest process and in collaboration with UK research teams, the involvement of bereaved families and professionals in research through the Epilepsy Deaths Register. See

The Purple Ball is an impressive event raising thousands of pounds for SUDEP Action – and features a three course meal, music, dancing, entertainment, a raffle – and above all a great night out. This year the event is on Saturday, October 5th, 2024, at the Winter Gardens in Weston-super-Mare. Tickets are now available – scan the QR code on the poster or visit

If you have been affected by an epilepsy death, please contact our support team on 01235 772852. Visit for more information and see Johdi’s story at

To read Emma’s article see