The life of a charity CEO can be tough – the ongoing quest to find money to keep us going, and the sense of responsibility one feels for all our employees and the people affected by encephalitis around the world who need us to keep being here.

On the other hand I get to work with amazing people and I travel the world promoting our message and doing what we can to lessen the burden of encephalitis.

As one of their ambassadors the European Brain Council invited me to join them in February for one of their meetings in Brussels and to share broad information about encephalitis and the impact the condition can have on patients.

In May, I spoke in Stockholm at the Northern European Conference on Travel Medicine about Japanese encephalitis and the impact it has on families affected.

In June, I spoke at the European Neuroconvention about one of my passions – narrative medicine and the importance of patient stories.

As I write, I am currently in Barcelona and have a poster presentation on this very subject, sharing three patient survivor accounts of life after NMDA-receptor encephalitis. The conference here is a summit hosted by The Lancet Neurology and The Lancet Psychiatry looking at inflammation and immunity in disorders of the brain and mind. It is clear that inflammation not only has a role in encephalitis but is also responsible for a range of neurological and psychiatric presentations. This is such an important topic for discussion that we are also very proud to be sponsoring part of the conference and this enables me to give a short address about our society, the importance of our work, and of course rallying enthusiasm for our exciting plans for World Encephalitis Day 2019!

One professional coup this year is certainly being a co-applicant on a new NIHR-funded study - Global Health Research Group (GHRG) on Improving the Management of Acute Brain Infections at University of Liverpool. In addition to being a co-applicant on this study, I was honoured to be invited to Chair the Public and Patient Involvement arm of the trial. 

The study recognises that acute brain infections are major causes of illness and death globally, partly through shortage of expertise in tackling them. In many settings, the causative organisms are not determined because of failures in diagnosis, so that treatment has to be guessed at, and is often wrong.

This GHRG links Liverpool, with its outstanding reputation in brain infections research, to the internationally renowned Warwick Centre for Applied Health Research and Delivery, and to leading research institutes in Malawi, India and Brazil. We will use mixed method approaches to understand where the difficulties in management lie.  These findings will inform the development of a compound intervention to improve diagnostic investigations. We also will continue our recent work strengthening diagnosis through simple diagnostic kits based on pathogen discovery and host genomic approaches. With improved diagnosis, more patients will be on the right treatment, leading to better outcomes.

So as you can see there is never a dull moment in my work-life and certainly never enough hours in the day!