1 in 100 people live with epilepsy - that's 4x more than those living with Parkinson's and half the number of stroke survivors in the UK. But investment doesn't reflect this. We know not everyone’s epilepsy can be controlled by treatment but 7 in 10 people are able to control the condition through medication. We know that in disadvantaged communities prevalence and incidence rates are at least 40% higher than in the least deprived areas. We know that epilepsy effects all demographics, but that as the population ages we are seeing a growing number of older people developing co morbidities, including epilepsy. We know that the unpredictability and social stigma around epilepsy can mean it is hidden. You rarely hear someone high profile talk about it in the same way as motor neurone disease or cancer. We know that there are a number of medium sized charities supporting people with epilepsy, rather than one large one, which can fragment the message and the services on offer, and that to stop duplication we have to define our space clearly.

But we also know what other charities have achieved over the last decade or so grappling with similar dilemmas, for example MIND, Parkinson’s, Versus Arthritis, MND. So we know there is real potential to raise the issue of epilepsy and to grow if we learn from these successful charities.