New EpSMon app creates lasting legacy for Shane
Shane Corrigan died of SUDEP in 2018. Funds raised in his name have supported the development and rollout of the EpSMon app.
The EpSMon app – an epilepsy self-management and tracking tool – is now being made available free of charge to everyone in the UK, thanks in large part to the family and friends of Shane Corrigan, who died from SUDEP in 2018.
Shane was just 23 when he died, only three years after being diagnosed with epilepsy. He was in his second year at university, so the diagnosis had a huge impact on both him and his life as a student. He had to make significant changes to his everyday life, including giving up his driving licence. While that was difficult for him, he never imagined epilepsy would ultimately take his life.
In 2022, Shane’s family and friends organised a sponsored cycle ride from London to Achill, on Ireland’s west coast, in his memory. The event raised more than £165,000 for SUDEP Action and Epilepsy Ireland. The funds were used to support the development and rollout of a new and improved version of the EpSMon app, while also helping to introduce the SUDEP & Seizure Safety Checklist for healthcare professionals in Ireland. Together, these initiatives aim to improve the lives of people living with epilepsy and help prevent deaths like Shane’s. Work on the latter project is still ongoing.
Born in County Mayo, Shane is buried on Achill Island. He is remembered for his big laugh and his larger-than-life, determined personality. He was popular, unfailingly positive, and had a remarkable ability to bring people together. He valued friendship, honesty and integrity above all else. For Shane, it didn’t matter who you were – he wanted to involve you in the conversation. Whether discussing ideas or debating issues, he had a gift for making everyone feel included, and you always came away feeling better for having spent time in his company.
SUDEP stands for Sudden Unexpected Death in Epilepsy. It’s when someone with epilepsy dies and no other cause of death can be found. It’s not known what causes SUDEP, but research has shown that actions can be taken to reduce risks for many people with epilepsy. Taking positive steps to reduce seizures as much as possible is the best defence against SUDEP.
EpSMon was developed by epilepsy charity SUDEP Action, in partnership with a group of internationally renowned epilepsy experts. This easy-to-use app helps people understand more about their epilepsy so they can make informed decisions about when to speak to a health professional about safety and wellbeing. It provides a personal epilepsy record that keeps track of data.
Shane’s mum, Margaret Corrigan, says it is wonderful to see the efforts of everyone involved in the Cycle for Shane now bearing fruit. The 800 km ride exceeded all fundraising expectations, and the investment in the EpSMon app and the Irish SUDEP & Seizure Safety Checklist will create a lasting legacy that Shane’s family, friends and supporters can be immensely proud of.
Margaret was one of the cyclists who completed the journey from London to Achill, despite not having ridden a bike for more than 30 years. She was joined by Shane’s sister, Megan, who had very little cycling experience before taking on the challenge, alongside 15 other remarkable riders.
Margaret believes lifelong friendships were forged during the ride.
“It had a huge impact on all of us. It was a very emotional week. Apart from raising money, the other objective was to raise awareness of epilepsy, which affects so many people, and yet people still don’t talk about epilepsy. Many people living with epilepsy are not great at sharing the fact they have it because of the stigma surrounding it.
“Shane always said the hardest thing about living with epilepsy was having to tell people he had it. He once said, ‘I either have to really care about someone or barely know them, because once I tell them I have epilepsy, I can see people’s perception of me change.’
“It’s incredibly sad to think that someone can be treated differently simply because of a medical condition.”
Shane’s parents, Kevin and Margaret, and his sister, Megan, would like to express their wholehearted gratitude to all the cyclists, sponsors, friends, supporters and everyone else who helped make this extraordinary challenge possible. They hope its legacy will not only improve the lives of people living with epilepsy but also help prevent future deaths from SUDEP.
Find out more about EpSMon
Pictured above are, left, Shane Corrigan, and right, Shane’s sister Megan and parents Kevin and Margaret, with SUDEP Action president Lord Ed Vaizey and chair John Hirst.
