Giving young people with epilepsy a Boost!

So there I am – 30 minutes outside of Brussels on a Friday afternoon in the space-age corporate headquarters of the pharma company UCB (of Keppra fame). I have never before been to a Hackathon, so I had no idea what to expect when 70-odd strangers find together for the weekend, to ‘develop digital tools to improve the lives of people with epilepsy’.

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But after 48+ hours locked away in post-it filled rooms what emerged was incredible! A bunch of people had spent their spare time and energy to create 12 unique projects, each trying to help patients with epilepsy in their own way, fuelled by Red Bull, pizza and the conversations with people living with epilepsy who had also trekked out to UCB to help us make the tools relevant for them.

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The tools developed over the weekend ranged from games that facilitated participation of kids with epilepsy in research studies, to tools detecting seizures and providing instructions for bystanders so they know what to do when a seizure happens. And each one of them had a passionate and able bunch of people behind them, making it a joy to watch them all present.

In our team we focused on developing a tool for young people with epilepsy to regain some sense of control over their life. Using passive data capture on a smart phone, we started developing an app that can alert you when you may need to be a bit more careful about your lifestyle – and like a coach gives you a single, manageable tip of how you could achieve that. And when you’re doing well, the app doesn’t nag you – but instead gives you some advice on epilepsy and sex, on driving with epilepsy and links you into a network of positive stories of people living with epilepsy.

We didn’t take a prize home with us – there was some world-class competition – but several patients told us that the app hit a nerve. Many of the kids I see in clinic are desperate for knowledge and want to learn about their epilepsy and be in control – but the last thing they want is for their neurologist or parents to tell them what to do. So yes – meet boost, the coaching app developed specifically for young people with epilepsy:

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Watch this space… There may be more developments to come for this – it would be great to hear if you are interested in getting involved or if you have hints and tips that you want to share. Like I said – in a weekend in Brussels I think I have come a long way from not knowing what a hackathon even is! It’s been hard work with little sleep, but an uplifting experience!

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