About Us

Epilepsy Lifestyle is a small, East Sussex based charity, established at the beginning of 2014, operating with the mission to find solutions to the issues common to children and adults with an epilepsy diagnosis.

Epilepsy Lifestyle are here to provide practical solutions to the everyday issues that are faced by people with epilepsy. As the charity evolves we will research solutions to a number of issues that are common to those with an epilepsy diagnosis. Initially we will focus on sleeping/monitoring solutions.

Although there are a small number of charities who currently fund and provide grants for monitors we are the only charity funding for both children and adults, and giving our beneficiaries a choice over which monitoring/sleeping system will work best for their personal situation.

According to SUDEP Action SUDEP (Sudden Unexpected Death in Epilepsy Patients) affects approximately 1 in 1000 epilepsy patients every year. Whilst there is little evidence to show that a monitor/sleeping solution decreases the risk of SUDEP, our personal experience through facilitating a similar monitoring scheme showed that families and patients found the monitors invaluable at alerting to seizures, therefore allowing them to administer emergency medication and call for emergency services to attend if necessary.

The peace of mind that a monitor/ sleeping solution can give to a family or epilepsy patient can not be underestimated.

Our mission is to provide children and adults, diagnosed with any form of epilepsy, with solutions to help improve their quality of life. As well as providing solutions we will endeavour to signpost patients and their families to organisations that may be able to assist them in some capacity, whether that be the provision of knowledge and information specific to their condition or resources that may be beneficial to them.

Epilepsy Lifestyle does not administer advice or information relating to epilepsy or specific diagnosis. We make links with established organisations and refer patients and families on where appropriate.

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Marie Baker

Epilepsy Lifestyle is run by Marie Baker, who founded the charity Dravet Syndrome UK in January 2009. Over the 5 years of Marie’s leadership the charity funded 3 medical research projects, funded a research and database manager based at Yorkhill Hospital in Glasgow, built up a membership of over 270 affected families within the UK and funded over 110 epilepsy monitors for children diagnosed with Dravet Syndrome. The charity also arranged gatherings and produced literature for families and professionals.

Marie is most proud of the ‘Family Guide to Dravet Syndrome’, which she was instrumental in writing and remains the only family guide to this rare, neurological condition. She was delighted to receive an Eastbourne Achiever’s Award back in April 2013, presented by the Mayor, in recognition for her charity work to date. Marie resigned from her role as Chairperson of Dravet Syndrome UK in November 2013 and has decided to now go back into the charity sector as she acknowledges the need for a charity such as Epilepsy Lifestyle and is keen to use the skills, knowledge and contacts she developed through her 5 years running Dravet Syndrome UK for the benefit of children and adults diagnosed with any form of epilepsy.

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Fiona Porter-Kitson

Fiona first discovered Epilepsy Lifestyle through the Young Epilepsy App. She was desperate and didn't know who to turn to regarding her 9 year old son having night time seizures. She needed to know when her son was having seizures and as a result just wasn't sleeping. 'That's when I found Marie and Epilepsy Lifestyle' states Fiona. 'Within a month, Jude had a monitor on his bed and I could sleep again'.

Fiona wanted to pay the charity back, so the money could help another family. She organised a tea party, her daughter Olivia and her parents took part in a Christmas pudding dash and a friend of Fiona's, Debbie, ran the London marathon. Fiona excels at fundraising and really enjoy this aspect of the charity.

'My son Jude is now 10 years old. Epilepsy is a big part of his life, along with his specific learning difficulties. I also have a beautiful 13 year old daughter, who is very motivated, with a fantastic understanding of others with disabilities. My parents are also supportive of Epilepsy Lifestyle'

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Ian Kirwan

Ian completes the Epilepsy Lifestyle team as the charity treasurer. Ian has worked in the finance industry for almost 20 years and has a solid background in accountancy. Ian also has a child with severe epilepsy so understands the needs of the epilepsy community, in particular the importance of the 'Night Time Monitoring Scheme'. Ian has always been a keen fundraiser and has undertaken a number of challenges including skydives and marathon length walks to raise money for charities that have supported his son.

We are delighted to have Ian as part of the team.