Welcome address by Nesrin Shaheen, President of The Anti-NMDA Receptor Encephalitis Foundation, on the occasion of the 2nd Sonia Gramcko & Friends Singing for the cure benefit concert, 27th February, Ottawa, Ontario, Canada
Posted on March 13, 2016
Welcome to the second Sonia Gramcko & Friends Singing for the Cure Benefit Concert; a celebration of hope, recovery and healing. My name is Nesrin Shaheen and I am co-founder and president of the Foundation.
In Feb 2008 when my daughter was first diagnosed, there were no other families we could speak with. It was a new disease that had only been identified the previous year by Dr. Josep Dalmau, a prominent Spanish neurologist and researcher. Sonia was the first positively diagnosed case in Canada at the Children’s Hospital of Eastern Ontario.
I like to think of this evening as a historic event, since back in 2008 there were merely a couple of articles describing the illness. The illness is still frequently mis-diagnosed, often as a psychiatric illness and we are only now starting to shine a stark bright light on it.
Since those early days, we are now practically 3000 persons on social media and we have numerous support groups for families and survivors.
An important milestone, in 2011, was the publication of the award winning book, Brain on Fire: My Month of Madness by the journalist, Susannah Cahalan, herself a survivor. The movie of the book is expected to be released later this year.
A few weeks prior to the publication of the book, The Anti-NMDA Receptor Encephalitis Foundation, Inc. was established. The only organization in Canada and worldwide dedicated to this disease.
These are great strides that have been made in putting this disease on the map and in raising awareness. Thank you for being a part of it; thank you for being Anti NMDA Receptor Encephalitis!