A Message from the President of the Foundation, Nesrin Shaheen
Fellow Anti NMDA Family and Fighters,
Last Friday, 16 September 2016 I had the privilege and pleasure to attend the premiere screening
of Brain on Fire at the Toronto International Film Festival, at the Princess of Wales Theatre, to
represent the Foundation. For some this might be just a movie, but for me and I know for all of
you following, this is an important film and a historic milestone on the road to better treatments,
less misdiagnosis and hopefully one day a cure.
I took the opportunity to raise the profile of the Foundation by handing out the Foundation’s
bilingual pamphlet to the people lining up for the movie, to give them additional information
about the disease. I could not have done it without the invaluable help of the amazing Suzanne
Kong, her parents and a crew of Suzanne’s friends who helped get the information into the hands
of people to help them learn more about the disease. We also handed out buttons to anyone who
wanted one, which had our tagline, I am Anti NMDA Receptor Encephalitis.
After the movie, there was a Q & A with Susannah Cahalan and her husband Stephen Grywalski,
Dr. Najjar, Susannah’s neurologist, Chloë Grace Moretz, the star of Brain on Fire and Gerrad
Barrett the director of the film. About halfway through, survivors or their representatives were
invited on stage, to show the diverse face of anti-NMDA. This was completely unexpected and a
really nice touch. It was especially
gratifying when I noticed Gerrard
Barrett curiously examining the
button pin on the lapel of one of the
survivors. He then motioned to the
young man to hand it over to him
and at the end, told the audience to
use the hashtag #IAMANTINMDA
in their social media
communications. Needless to say, I
was absolutely delighted!
