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New Year message from Epilepsy Society

Created:

5 January 2017

Epilepsy Society's chief executive, Clare Pelham and acting chairman of the board of trustees, Adrian Waddingham look at why it might be better to tackle 2017, one day at a time.

At the beginning of a new year it's traditional to contemplate how we would like the next 12 months to pan out and what we hope, or even resolve, to achieve. But then we found ourselves pulled up short by a comment on our Facebook page.

It was in response to our #iwish campaign that we ran over Christmas and the New Year. The idea was that we told you what we wished for and you then shared your own wishes.

Seizure free

There were hundreds of inspiring comments, but the one that really hit home was from a lady who wished 'to just get through one day seizure free.' She wasn't thinking in terms of 365 days but instead just 24 hours and it was a wake up call.

For many people with epilepsy there is no guarantee that the next day, let alone year, will be theirs to do with as they wish, uninterrupted and unhindered. For many people epilepsy rules their calendar with an unashamed unpredictability.

Driving licence

Then there were those who were thinking in terms of a year and wishing for that magical 12 months free of seizures so they could regain or apply for their driving licence; there was the lady who wanted her daughter to enjoy life like other young women of her age, rather than sleeping through it due to the side effects of epilepsy medication; and the dad who just wished he had control of his seizures so he could take his baby swimming.

There can be few comments as motivating as those you shared with us through our #iwish campaign and they have certainly put us on course for 2017. Epilepsy Society marks its 125th anniversary this year and we will be making a big noise about it. Not because we want to celebrate 125 years of epilepsy. We don't. We want to make this a milestone year that really begins to kick epilepsy into touch.

Genetic testing

Epilepsy has been well documented since before Hippocrates' time in 400BC. We know that seizures are caused by excess electrical activity in the brain but we still cannot explain that final event that causes a single seizure to happen. This year we plan to begin exciting new work that could change this.

We believe that genetic testing holds the greatest hope of unravelling the mystery of epilepsy that has confounded scientists and physicians for centuries.

We believe that by looking at a person's DNA - the genetic code written in their small print - we will start to understand more fully what causes each person's epilepsy and how best to treat it. We are on the cusp of an exciting era that could see better diagnosis and better treatment on an individual basis. We are not talking cure but we are talking progress. And we are very excited.

Team Purple

But research doesn't happen in a day. It requires big data, big time and, unfortunately, big money. Which is why we are hoping you will join us at Team Purple and kick start 2017 by signing up for one of our challenges, running, trekking, cycling or sky diving to help raise money for Epilepsy Society. And if you don't fancy jumping out of a plane or pounding the streets to raise money, there's always Purple Day.

March 26 is living proof of what a difference a day can make. Purple Day is one of the biggest days, globally, in the epilepsy calendar. It is a day when everyone seems to channel their inner Mary Berry to bake cakes or rivals the shiny pates of bald icons such as Bruce Willis or Samuel L Jackson. And all in the cause of raising money for people with epilepsy.

Here at Epilepsy Society, that money helps to fund vital research into epilepsy as well as supporting people on a day to day basis through our dedicated epilepsy helpline and our epilepsy information service.

Powered by cup cakes

We are quite literally powered by cup cakes and shaved heads.

We will be doing our bit, too, and more news on that to come. We'll be doing it for the lady who would like to just get through one day seizure free. Whether you can spare a day or the long-term commitment of a physical challenge, we hope you will join us.

#happynewyear

New Year, New You

Sign up for one of our 125th anniversary year challenges.
Find out how you can get involved on Purple Day.