Encephalitis Society

Malton, North Yorkshire

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Overcoming challenges to help people worldwide

A charity’s vision of a world aware of encephalitis is a step closer as they complete their first six months on the CAF Resilience Project.

This vision was in large part why the Yorkshire-based Encephalitis Society was selected as one of the organisations on the pilot programme, to explore ways it can adapt and future-proof the way their operation works.

Eight out of 10 people do not know what encephalitis is, but the devastating neurological condition affects 500,000 people worldwide and can cause long-term, irreversible brain injury.

The Encephalitis Society works to tackle that lack of awareness and support more people affected by encephalitis and their families.

The charity is run by a team of just over nine people who deal with thousands of support requests from across the world, each year.

Now, six months into the Resilience Programme, the charity is creating a new theory of change, with CAF’s support, and is working towards achieving its targets which focus on its longevity and sustainability.

"Our biggest fear is that we will fail to raise the money we need to achieve our vision as fundraising in this climate, for a small charity, is currently the hardest it’s ever been."

Speaking to CAF about the day-to-day challenges, Phillippa Chapman, Director of Operations, said: “We have to achieve our vision with 9.3 whole time equivalent staff and our dedicated board and our volunteers, many of whom are living with a brain injury.

“Time is our biggest constraint, money is the second and focus the third. Our biggest fear is that we will fail to raise the money we need to achieve our vision as fundraising in this climate, for a small charity, is currently the hardest it’s ever been.”  

She added: “Being accepted onto the programme has demonstrated to others that we have masses of potential and amazing things still to achieve, from having a stable income to fund our essential service delivery to having support from CAF and their network of experts.”

The charity has certainly set its sights high – by 2027, it aims to raise over £5million annually from a diverse range of sustainable and ethical sources, and hopes it can be the go-to organisation for health professionals worldwide.

The charity’s board also hopes to have 50% of the general population aware of encephalitis in 10 countries and to be meeting the individual needs of 80,000 people through their support services.

Encephalitis affects up to 6,000 people in the UK each year and potentially hundreds of thousands worldwide. In the USA, there were approximately 250,000 patients admitted to hospital with a diagnosis of encephalitis in the last decade.


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Charities Aid Foundation © | Registered Charity Number 268369
25 Kings Hill Avenue, Kings Hill, West Malling, Kent ME19 4TA
10 St. Bride Street, London EC4A 4AD
Telephone: 03000 123 000