About Encephalitis Society

Encephalitis Society is a multi-award winning charity that supports people and families affected by encephalitis, an inflammation of the brain.  Their support stops families from breaking down after a diagnosis; and alleviates mental health issues, loneliness, isolation and fear.  They also raise awareness of the condition so that it can be diagnosed and treated early. 

Anyone can become ill with encephalitis, at any age.  Compared to other infectious diseases, it has a high mortality rate and 5,000 people in the UK contract encephalitis each year.

Typical of the small charities on the CAF Resilience programme, the small staff team were determined to maximise their impact. They are leading experts in their field, but lacked the capacity and income needed to achieve the charity’s vision, which is why they were attracted to the CAF Resilience programme:  

“Time, money and focus are our biggest constraints. Many of our staff, volunteers and trustees are living with a brain injury.”

Encephalitis Society 2018 July British 10k

The charity in action

As an example of their work, Encephalitis Society told us the story of Alan and Celia.  Celia became disorientated and confused whilst heavily pregnant. 

She underwent numerous tests before and after giving birth but her symptoms remained unexplained until she was finally diagnosed with encephalitis.  The couple’s joy at the birth of their daughter was marred by fears over Celia’s deteriorating health. Alan struggled with caring for his wife, bringing up his daughter singlehandedly and holding down a full-time job. 

Throughout this time, Alan struggled to get the help that his family needed.  He contacted the Encephalitis Society and met with their CEO, who helped advocate for the family and their needs.

Celia sadly died when their daughter was eight years old.  However, Alan and his daughter continue to be supported by the charity; he is one of their most supportive members and fundraisers.

Encephalitis Society and CAF Resilience

Encephalitis Society had struggled to generate sufficient funds for a number of years. 

“Fundraising for a small charity in this current climate is the hardest it has ever been.”

Their biggest wish from the grant and support available through CAF’s network and team of experts was for a more stable income base so they could help more families like Alan’s in the most effective way. 

They were able to identify what they really needed through CAF’s advisory and used a report enabled through CAF to convince a group of philanthropists to commit £50k to engage a leading epidemiologist to do a baseline situational analysis on encephalitis around the world. This is a huge piece of work that will inform their future strategy.

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