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How we will end epilepsy


Ending epilepsy

How we will end epilepsy

Date Published: May 5, 2023

Author: James Matejka

Through research, a life without epilepsy is possible. On the Research Blog this month, we’ll be sharing our plans for how, with the help of the epilepsy community, we are working towards preventing seizures for everyone and putting an end to epilepsy.

“The news was hard to take and hard to believe, especially now knowing it will be with me for the rest of my life.”

After years of episodes and recurring seizures, Luke was diagnosed with epilepsy in 2022. He knows his seizures can come out of nowhere, and could be fatal – “it’s a scary thing to be conscious of.”

Epilepsy disrupts the lives of millions of people worldwide like Luke. The seizures, the wait for a clear diagnosis, the treatments and their side effects, can have a huge impact on a person. And on top of that, the fear of seizures, not knowing when they might happen or the impact they could have, can destroy a person’s independence and mental health.

But through research, we can create a world where epilepsy doesn’t have this kind of power over people. Where everyone can get a quick diagnosis and the right treatment, and where no one has to lose a loved one to epilepsy. Where everyone can live their life free from seizures.

In short, we can put an end to epilepsy. And this month on the Research Blog, we’ll set out how we’ll do that.

Everyone ending epilepsy together

During the UK Epilepsy Priority Setting Partnership, people affected by epilepsy identified the key research questions that matter most to them. And many researchers are already working on answering these questions.

However, it’s not enough to just hand over a list of questions to scientists and hope for the best. If we’re going to end epilepsy, we need a coordinated effort to make sure the right things happen at pace and with optimal impact for the 1 in 100 people living with epilepsy.

#Every1EndingEpilepsy is that coordinated effort – a national epilepsy research collaborative, funded and led by Epilepsy Research UK. The team behind the #Every1EndingEpilepsy programme is being led by Professors Tony Marson, Helen Cross, and Mark Richardson. This trio of epilepsy experts are creating a ‘roadmap’ for research into epilepsy that will take us from where we are now to where we want to be – a seizure-free world.

Later this month on the Research Blog, Professor Tony Marson will explain more about the #Every1EndingEpilepsy programme, and the progress already made since it launched last year.

Investment in research

One of the key aims of the #Every1EndingEpilepsy programme is to achieve significant long-term sustainable investment in epilepsy research. Epilepsy Research UK’s own experience is evidence of what’s possible – for every £1 we’ve given to scientists, they’ve been able to secure a further £5.91 for epilepsy research from other funders.

Since 2018, Epilepsy Research UK has invested over £6 million in research. Professor Mike Cousin leads our Scientific Advisory Committee, which rigorously assesses the research funding applications we receive. On the Research Blog during National Epilepsy Week (22nd-28th May), Mike will announce the latest projects to be awarded funding, and explain what they will achieve for people with epilepsy.

And finally, at the end of May, Epilepsy Research UK’s Chief Executive Maxine Smeaton will be discussing the journey the organisation has been on, and how bringing people affected by epilepsy together, with key stakeholders, will be integral to ending epilepsy.

Creating a world free from epilepsy

Next week on the Research Blog, he will share more about his experiences and the hopes he has for epilepsy research. As Luke says, “It’s important to fund research into epilepsy because the condition can be so hard to diagnose and so dangerous for those without diagnosis, especially if it comes out of the blue as I experienced.”

With help from Luke and everyone else affected by epilepsy, we know we can end epilepsy for good. With earlier diagnosis and better treatments, everyone should be able to live the seizure-free life they deserve.

Luke knows the difference this would make to people like him: “I would love for people to be able to live with a lot more peace of mind and less worry or problems in their day to day lives,” he says. “To let people be able to breathe whilst living with epilepsy.”

Follow the Research Blog this month to hear more from Luke, Tony, Mike, and Maxine, on why we need to end epilepsy and how we’ll do it. Sign-up to our emails to get updates when new blog posts are published, and other news from Epilepsy Research UK.