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2017 ended with a disaster but we're not beaten

Created:

8 January 2018

Epilepsy Society's chief executive Clare Pelham looks back over the year, at the highs and - sadly - a very snowy low.

Clare Pelham is resting her chin on her hand and looking pensively away from the camera. She is wearing a purple top.

2017 ended with something of a disaster for us at Epilepsy Society. It happens sometimes. For months we had been planning an exciting and key fundraising event - an accessible ice skating rink - something very close to my heart as wheelchair ice-skating would be a tangible seasonal demonstration of our commitment to inclusiveness - as well as a Santa Dash at our Chalfont Centre in Buckinghamshire.

We had mince pies and mulled wines, and our offices were piled high in Santa suits for the much anticipated 2km dash - I have never seen so many pull-on beards in my life. And then down came the snow. By the bucket load.

Our champion gnome Gus is standing in the snow alongside a gnome-sized snowman with brozen peas for its eyes.Even our wintry gnome man Gus had to put his hopes of skating on ice, and make friends instead with a snowman with a couple of frozen peas for eyes.

You may or may not be aware but Epilepsy Society is based in the Chiltern Hills. We are at the top of one side of a valley, and while for the most of the year, this makes it a wonderful location, not too far from London, snow quickly turns it into a no-go zone. With heavy hearts, we had to cancel our wonderful event.

Our trustees and directors are all decked out in Santa suits and waving happily at the camera.
Before the snow came, our trustees and directors cutting a pre-Dash dash in their Santa suits.

We were hugely disappointed and it would have been easy to have cursed the weather and felt sorry for ourselves. Except that life sometimes has a way of waking us up to truths which are under our very noses, but which we are sometimes too busy to appreciate.

Every day, people with uncontrolled epilepsy have their plans thwarted, their lives interrupted, by seizures which have no respect for time or location. A seizure can wipe out a whole period of time, ruin a special occasion or simply turn a trip to the supermarket into an ambulance ride to the hospital and no groceries bought for the week.

We regularly hear from our supporters whose lives are turned upside down by their seizures. One gentleman refers to his as the 'unwanted visitor'. I think that would have been a good description for the snow on 7 December.

The meteorological metaphor - if you can call it that - was a timely reminder of just how important our work is. Our goal is to improve the quality of life for everyone with epilepsy and we know that the unpredictable nature of seizures is one of the toughest challenges for people to cope with. That snow was certainly a poignant reminder for us all.

Whole genome sequencing

In spite of its unfortunate ending, 2017 has actually been an exciting year at Epilepsy Society as our research team explores the three billion letters inside our DNA. This is called whole genome sequencing and already it is giving us a greater window into what epilepsy actually is and how we can tackle it.

Professor Sander is in a Christmas red jumper and is sitting with Professor Sanjay Sisodiya, wearing a suit and research assistant Natascha is a grey top. They are reading cards bearing people's hopes for our research.
 Professors Ley Sander, left and Sanjay Sisodiya, and research assistant Natascha Schneider, read some of the messages we have received from supporters, expressing their hopes for our research.

I am ever in awe of the fact that, even as I am writing this in my office - with the postman passing by the window, dog walkers being pulled in the direction of the bushes, and the supermarket delivery van bringing an online order - just a stone's throw away in an adjacent building, researchers from all over the world are poring over DNA sequences and making discoveries that could revolutionise the diagnosis and treatment of epilepsy for generations to come. It is quite humbling.

Last year we took over 400 blood samples for DNA testing. That was alongside 800 plus MRI scans. The deeper into the brain we look and the more we mine through the infinite information that genomic sequencing is revealing, the brighter the future looks for those who endure, not an occasional white-out on an exceptional Sunday in December, but disruptive seizures on a regular basis.

Sodium valproate campaign

Genomics is the future, but of course we also need to deal with epilepsy in the here and now. This year one of our focuses has been women and girls of childbearing age who are taking the epilepsy drug sodium valproate.

This drug has been widely prescribed since the '70s, but although for many it is a life saving drug, it can pose a serious risk to babies exposed to the medication in the womb. We carried out a survey of more than 2,000 women and girls which showed that one in five women taking sodium valproate were not aware of the risks, while 70 per cent had not received a toolkit about the drug from the Medicines and Healthcare products Regulatory Agency.

We put on our campaigning hats, calling for all women prescribed sodium valproate to have mandatory conversations with their doctors. We were not asking for anything complicated or expensive.  We are all too aware of the financial pressures on the NHS - just simply timely and regular communications which would enable every woman taking sodium valproate to make informed decisions about their treatment alongside their family planning.

Clare is wearing a red dress and is being interviewed by the BBC in the shade of a leafy London square.
Here I am, explaining the issues around sodium valproate to the BBC.

We shouted loudly across all broadcasting platforms advocating on all news programmes as well as a range of others from Woman's Hour on Radio 4 to Victoria Derbyshire on BBC TV.   We also made sure the voices of women with epilepsy were represented in a parliamentary debate; and we presented our survey results at a public hearing held as part of a safety review into the drug by the European Medicines Agency.

And now we wait, although we're not doing that quietly. The results of the public hearing should be published early this year, but we are still working in the background influencing politicians and others to try to ensure that we achieve the change that women with epilepsy deserve.

Tackling stigma

We know that one of the issues that affects many people with epilepsy, is the stigma around the condition. So, we were pleased to work with Young Epilepsy and high street fashion retailers, River Island, on our #explainepilepsy campaign during National Epilepsy Week.

Our young epilepsy ambassadors are sitting on turquoise and yellow velvet sofas and chairs, waiting for filming to begin. The crew are checking cameras and the boom mic.
Our young, dynamic epilepsy ambassadors share their experiences of living with epilepsy at our round table event in River Island's Oxford Street venue.

This was very much a digital campaign with some of our young, dynamic epilepsy ambassadors sharing their stories, views and thoughts across social media. In just one week, 30,000 people watched them talking about their experiences on our videos and our Facebook posts reached 500k followers. Social media is amazing at breaking down barriers.

Your generous donations

Finally, I cannot end without mentioning our very emotional Christmas appeal centred around a little girl, Ellie, who lost her friend Patrick to epilepsy. Ellie was heartbroken, but resolved to ensure her friend had not died in vain. So she wrote to a high profile Epilepsy Society supporter asking that  someone should 'make a cure' for epilepsy. The letter was sent to me, and Ellie's heartfelt plea became the basis of our Christmas appeal. To date we have raised £28,000.  If you would like to add to that total, please click here.

Ellie thanks all our supporters for their donations to our appeal. Ellie has long blonde hair and is sitting on a bennch in the garden. She is wearing a grey cardigan.

We know that in any year, not everything will go according to plan. But we also know that with the support of so many wonderful people - scientists, campaigners, MPs, cake bakers, runners, head shavers and little girls like Ellie - we will get through it together.

Thank you very much for all your support over the last 12 months.  Together we are going to do so much more for people with epilepsy in 2018.