We were delighted to be asked to be part of the Autoimmune Encephalitis Symposium that HESA had organised, and always keen to see opportunities to collaborate and learn, I booked my flights to New York City... the Big Apple!

Firstly, I got to spend some valuable time with Dr Anusha Yeshokumar, who is an Autoimmune Encephalitis Neurology Specialist based at Mount Sinai Hospital in New York. We have worked with Anusha and her research in the past and keen to meet others in her team and network we spent a valuable afternoon seeing where the Encephalitis Society can add further value to research and patients. In particular developing a network around patients to provide the support we know makes difference and have been providing for 25 years.

I had a wonderful evening prior to the symposium with the speakers, organisers and volunteers for the Autoimmune Symposium, a great chance to meet others and put some faces to names. I knew a lot of the speakers from the Encephalitis Conference we host annually in December so it was great to catch-up with them as well.

Phillippa, third right, and the patient group

The symposium had a lot of people affected and their families attending in the audience and speaking at the event, so often we hear the traumatic experiences of those affected and it never fails to be hard to hear how difficult people’s journeys can be. An interesting discussion point was bringing together psychiatry with neurology and very important part of diagnosing encephalitis. Part of our World Encephalitis Day campaign we worked with Oxford Autoimmune Neurology Group and their recent paper which identifies the signs for psychiatry teams to look out for that might help signpost patients to the appropriate neurological pathway.

I learnt a lot at the symposium about the impact that the US healthcare system can have on treatments and accessibility – understanding this is beneficial to those that contact us from overseas. Our website is consistently accessed second highest by people based in the USA so it’s important we get an understanding and find experts who can help.

It was lovely to meet with some of our volunteers and advocates at the conference as well – our long-standing volunteer Tobie– good to have a catch-up in person for a change! 

Whilst in New York I also got the joy of visiting our lovely Ambassador Susannah Cahalan and meet her beautiful twins. We got up to date on all her latest projects and talk about the massive impact that Brain on Fire has had around the world, it really has helped saved lives. I was lucky enough to get some down time and got to see some of the sights and sounds of New York, can’t quite beat the statue of liberty for iconic scenery and I definitely ate some New York style pizza.

Susannah Cahalan and Phillippa

I said goodbye to New York and headed to Baltimore to spend the day with Prof Arun Venkatesan and his team at the Encephalitis Centre at Johns Hopkins Hospital. It was fascinating to learn more about the work and research going on at the centre and again where the society could add value. We know our membership love to get involved in research and a big part of our work is bringing that vital voice of those that have been directly affected and their carers to research – to make research ethical, robust and focused on improving the quality of life affected of those affected.

A trip highlight for me was spending a couple of hours talking to a group of patients and their family members, there is nothing quite like hearing others stories and peer to peer support. I have taken a lot away from the trip and working with the rest of the team and our networks to see what next steps we can take.

We are proud to work alongside such talented experts who are all working hard to improve the quality of life of people affected by encephalitis.  

Phillippa Chapman