A message from Jon Ainley, support coordinator of the Encephalitis Society

I am very proud to say that this is my 16th year offering support at the Encephalitis Society. How many people have I spoken to during this time?

I simply do not know!

But what I do know is that I am very proud to have touched so many lives, be it offering advice, sending you information or simply being a listening ear. The times in which we find ourselves today are very testing for all of us, more so for people who may be feeling vulnerable due to self-isolation, carers who have no respite, and patients who are beginning their recovery from encephalitis.

I want you all to stay safe so that we can prevail together, we will see better times. They say it is always the darkest before the dawn and while we are certainly living through some dark days, eventually dawn will break, and the light will shine through.

Over the past few weeks, we have experienced unprecedented demand for our support services.

Calls and enquiries have risen dramatically amid concerns from people worried that they are more susceptible to COVID-19, we’ve had calls about loneliness and anxiety during the lockdown, and, of course, calls from new families who are encountering an unfamiliar condition called encephalitis for the first time and trying to cope with all the uncertainty and emotional turmoil that it brings.

We are doing our best to survive the crisis and rise to this challenge, but times are very difficult for charities and the voluntary sector too. You might have heard that the Government have said there will be a £750 million rescue package for charities? We don’t think charities like us are going to be eligible, though we are pleased that some amazing causes will benefit. This makes us extra determined to still be here to support you when this is all over, but we need your help urgently now.

We need your help because we think that COVID-19 will cause conditions like encephalitis to increase, and we’ve already been asked to work with the Association of British Neurologists on a taskforce to see how we can help. That’s how essential our services are and how valued our expertise is in the fight against this pandemic.

Because we are the only charity delivering frontline services and research for people affected by encephalitis, the 113% increase in support calls I’ve seen, will keep growing, people will continue to struggle, families will still fracture and lives will be devastated. Because encephalitis is still happening every single day, and people will need us even more in the future.

I’m asking you to show your commitment to the Encephalitis Society by making a small donation to secure our services for future people. Some of you have already done this and we thank you, but over 90% of our members haven’t yet. If you can, please give and help me continue to support people for the next ten years!

Will You Help?

We urgently need your support, because we receive no government funding and every pound matters to us right now. If you can, make a donation or set up a regular gift, please do so and help us continue to support yourselves and anyone else who may need our help today and in the future.

Whilst lockdown sees us physically out of our offices, the team at the Encephalitis Society are working tirelessly from their homes. I am very proud at the way we have adapted in this current crisis. We do this because experience tells us just how important it is that we keep doing what we do best which is being there for a life touched by encephalitis. I hope you can share in the pride that I feel!

Your friend,


Support Coordinator – Encephalitis Society