It has long been a popular book for Members of The Encephalitis Society.

And now Brain on Fire has been given the silver screen treatment and enjoyed its premiere at The Toronto International Film Festival on September 16.

We jetted over to Canada to join author Susannah Cahalan, actress Chloe Grace Moretz and director Gerard Barrett for its unveiling and admit we were blown away by what we saw!

Like the book, Brain on Fire follows the story of how Susannah, a New York Post journalist, was affected by Anti-NMDA Receptor Encephalitis and repeatedly misdiagnosed following a series of violent outbursts and severe amnesia until a doctor called Souhel Najjar solved the puzzle.

Brain on Fire premiere

We have championed the book ever since its release and believe the film will do just as much good in raising awareness of encephalitis among the general public when it is released.

Speaking after the premiere, both the director and star said they were keen to portray the condition “truthfully” to honour Susannah’s story.

Gerard said:

What I wanted to do was tell the story as simply as possible and put the audience in the world observing Susannah and Chloe’s performance. We approached Brain on Fire with honesty and truthfulness. I said to Chloe, we have to respect Susannah’s story, Susannah herself, her family and the people around her. There are a lot of people trapped by autoimmune diseases. We really made this movie for them – and to give them a voice.

Gerard described Chloe as a ‘fearless actor’ and revealed the difficulties she faced when having to accurately portray the journey Susannah went through during a shoot which was only 17 days long.

“What she went through was scary,” he added

Chloe said:

It was really just about letting go. I asked Susannah, ‘do you remember anything from that time?’ She told me she didn’t remember anything. I went through and talked to Dr Najjar, and he sent a lot of videos and paperwork and the nurses talked about her aggressive behaviour and I just kind of pieced it together. The most pertinent way to portray this amazing heroine of a woman on screen was really to talk to her, to understand her and understand what a bright light she is and really understand the pre Anti-NMDA Susannah. Because that’s how you really see the effect and the gravity that this horrible disease has on her and her family.

Joining the filmmakers on stage were Susannah, her husband Stephen Grywalski and Dr Najjar, who said:

I am so overwhelmed and touched. Mostly I have to say the real hero of this story is Susannah. Her story has touched many hearts and saved many lives. She has become the voice for those afflicted with autoimmune disorders of the brain who cannot advocate for themselves. What an inspirational person she is.

Husband Stephen said:

When people ask me, I always say ‘in my memory, it is like a movie’ and now I don’t have to say that! I thought Chloe was great as were the rest of the cast.

Susannah when asked about her journey and whether it has changed her as a person, reflected:

I don’t think you can go through this traumatic experience and the amazing experiences like this that come from it and remain the same person. I think I have changed - so many remarkable things have happened from a terrible, very dark experience. Coming out of the other side, I am changed – hopefully for the better!

Full press conference

Thoughts from the Premiere

I have to say my first ever visit to Canada certainly made a life-long impact – even though it barely lasted 48 hours! (writes Phillippa Chapman, Director of Operations)

I was privileged to spend a couple of days at the Toronto International Film Festival and watch the premiere of a movie which I have no doubt will do lots of good raising awareness of encephalitis.

Brain On Fire (for those of you who do not know) is a best-selling book written by Susannah Cahalan.

It follows the nightmarish journey she underwent when affected by Anti-NMDA Receptor Encephalitis and is a fantastic memoir. It was inevitable that it would be turned into a film and we were delighted when Oscar winner Charlize Theron bought the rights and cast Chloe Grace Moretz, a very talented young actress with a bright future, as Susannah.

The film attracted a host of Hollywood stars – Richard Armitage (The Hobbit) and Carrie-Anne Moss (The Matrix/ Momento) play Susannah’s parents and Thomas Mann (Me and Earl and the Dying Girl) stars as Susannah’s boyfriend, Stephen.


What can I say about the film? Very little at the moment, I am afraid! Sorry to tease but I have been invited – together with Dr Ava Easton – to write a review for The Lancet Neurology and have promised to keep my exact thoughts quiet until then. Sorry! What I can say is that I thoroughly enjoyed the film and premiere (which I watched alongside many survivors) and was delighted to be invited on stage together with the survivors by director Gerard Barrett to talk about the work of The Society. It was also very moving to survivors speak about the film, prompting Chloe to say backstage: “I didn’t realise the impact this film would have.”

The after-party gave me a fantastic opportunity to talk to the cast and crew and hopefully build up some relationships which will stand us in good stead in the future.

It was also wonderful to meet so many survivors, enjoy lunch with John Spencer from the Autoimmune Encephalitis Alliance and talk about future projects, and speak to Dr Souhel Najjar, the man who diagnosed Susannah’s encephalitis, who we hope to meet when we visit New York in November. So – even though my trip to Toronto was very short – I can happily say that it will be of huge benefit to The Society for years to come! And, finally, I have to say that we will have some exciting surprises surrounding Brain in Fire to reveal in the near future. Watch this space!