Supporter stories

Help raise funds to support epilepsy research at Murdoch Children’s Research Institute by supporting team ‘BroStorm’.

Team ‘BroStorm’ is made up of brother-in-laws Ben Lyons and Chris Napier, who are participating in ‘The Hunt 1000’ – an unsupported off-road cycling event.

Together they will travel 1,000 kilometres through the Australian Alps, departing Melbourne on Tuesday, 22 November and finishing in Canberra on Saturday, 3 December. The duo will face rough terrain, mountains and river crossings whilst carrying camping and cooking gear, food supplies and water on their bikes.

In memory of Ben’s son Jackson, their goal is to raise awareness and funds for the vital epilepsy research that takes place at Murdoch Children’s.

Ben and his wife, Leanne, lost their three-year-old son in April 2021. Jackson suffered from a genetic brain condition called SCN2A encephalopathy and overcame many challenges during his short life. Jackson inspired many with his strength and resilience, and his memory continues to do so today.

Mutations in the SCN2A gene cause a devastating condition that can result in severe disability and in some cases, death. People with SCN2A encephalopathy experience treatment-resistant epilepsy, plus neurodevelopmental disorders such as developmental delay, intellectual disability and autism spectrum disorders. They may also have low muscle strength, sleep difficulties and problems with their stomach and gut, such as constipation and reflux. There is currently no cure for SCN2A-related conditions, although clinical trials for novel treatments are on the horizon.

The Murdoch Children’s epilepsy research team is led by Dr Katherine Howell, one of Jackson’s treating clinicians. The team aims to improve outcomes for children with epilepsy to ensure they have the best opportunity to live healthy and fulfilled lives.

Their research on SCN2A encephalopathy is conducted in collaboration with the families of children with this condition, plus laboratory scientists and clinicians from around the world. It has advanced understanding of this condition, providing critical data to guide current treatments and inform the development of new and better treatments.

With a primarily clinician-led epilepsy research team, their links with The Royal Children’s Hospital mean that their findings can be promptly translated into improved clinical care for patients.

Support this critical work by contributing to Ben and Chris’ GoFundMe page and learn more about how you can help.