Dr Ava Easton, the Chief Executive of the Encephalitis Society, looks at the role of the Trustees in helping the work of the Encephalitis Society and why our volunteers play a critical role.

We celebrated Volunteers’ Week in June and it reminded me of a conversation I had recently about our Trustees.

“What do they do? Is their role important to the Encephalitis Society?”

The answer to both questions is a resounding YES! 

Not only are Trustees legally responsible for the Encephalitis Society, but – and especially in our case – they bring a wealth of expertise which helps to move us forward as a charity.

And they do all of this in their free time!

There is a wonderful tradition of people around the world who volunteer their skills, time and experience to help charities such as ours. In the UK, according to Trustees Week, there are approximately 196,000 charities and over one million trustees offering support to them.

That is a staggering amount of people and, I have no doubts, that generosity will be echoed globally.

At the Encephalitis Society, we have Trustees who are experts in legal matters, human resources, finance, information and technology, diversity and inclusion, fundraising, marketing, public relations, safeguarding and health and safety.

To have that layer of knowledge to turn to and rely upon is very comforting to everyone at the Encephalitis Society and means we are in a very secure place going forward.

There is an adage – which I firmly adhere to – that you should surround yourself with good people who have more expertise and knowledge in their respective areas.

I will give you an example.

Gagun Gahir, Vice Chair of our Trustees and our Diversity and Inclusion Trustee, has a personal connection to us through a family member who is recovering from encephalitis.

Diversity and Inclusion is something which has been at the forefront of our thinking for many years now.

Encephalitis, as we all know, is a condition that can affect anyone of any age, regardless of their religion, race, nationality, gender, sexual orientation or ethnicity.

However, the Encephalitis Society is aware that our information, our support services - our messaging in general - may not be reaching or representing the full breadth of the population.

Why is that? What can we do to target those hard-to-reach groups? How can we encourage them to access our services or share their stories? 

Those are questions that we have been asking ourselves and it is where Gagun has brought insight and clarity.

Gagun told me: “One area of the Encephalitis Society which I admire is its willingness to ask the tough questions of itself and never rest on its laurels.

“When it comes to diversity and inclusion, I feel we have made real progress over the past couple of years. I am a believer in constant, incremental improvement - so there are always areas where we could and should do better.

“Our board of Trustees is a good example where we have made a concerted effort to bring in experience and people from different backgrounds and with different perspectives. It is something which we all feel has already started to pay dividends.

“We want to echo that throughout the work of the Encephalitis Society. We want visitors to our website or to our social media channels to feel they are represented and welcomed. The more we do this, the more comfortable people of different races and ethnicities, religions, nationalities, gender identities, sexual orientations and ages will feel in coming forward and getting the information or support they seek.

"In turn, I hope they will share their stories with others and so this amazing community of people becomes stronger and more able to survive well into the future. This is something I am very passionate about and what we are all working towards.”

You see – it is quite simple in the end. Surround yourself with people with good intentions and who have a passion and a drive and the rest will follow.

It is the same for all our Trustees, the same for our Scientific Advisory Panel, our vice Presidents and all our volunteers whose free time is spent in helping the Encephalitis Society to help others.

We are very lucky to be supported by so many.

*If you have any ideas or suggestions for how we can be more inclusive, please contact Gagun and the Encephalitis Society via [email protected]