On March 27th, doctors and scientists from across the US and the world will gather for a two day AE Symposium, the goal of which is to improve the diagnosis, treatment and care for children and adults with autoimmune encephalitis (AE) and advance research towards a cure.
The conference is sponsored by the Autoimmune Encephalitis Alliance (AE Alliance), a Durham-based nonprofit founded by two families personally affected by the disease. Will and Leslie McDow’s daughter Florence died at the age of six after a four-year struggle with AE. Helen and Daniel Egger’s son Sasha is currently in remission, but has been hospitalized more than ten times since his diagnosis in 2009.
The AE Symposium is the first concrete step toward the Alliance’s goal of finding a cure for AE, a disease that often goes misdiagnosed. In 2007, doctors identified the first specific antibodies causing autoimmune encephalitis. Today, more than 13 different antibodies are known to cause AE. Despite these advances, too many patients remain undiagnosed because of a lack of awareness about AE among doctors and insufficient communication across medical disciplines. Too many families suffer alone without access to lifesaving care.
In concert with the AE Symposium, Duke Medicine and the AE Alliance are hosting Autoimmune Encephalitis Awareness Week.
On Wednesday March 26th and Thursday March 27th, multiple departments at the Duke School of Medicine, including psychiatry, pediatrics, neurology, and neurobiology, will host a series of talks at Duke Medical Center to share knowledge about autoimmune encephalitis with doctors, patients and families. See AEalliance.org/events for a full listing of events at Duke.
A highlight of our AE Awareness Week is a community event. On Wednesday, March 26th, the Alliance will host a conversation between Susannah Cahalan, author of the bestselling memoir, “Brain on Fire: My Month of Madness” and AE Alliance board member, and her neurologist, Dr. Souhel Najjar from New York University Langone Medical Center and co-chair of the AE Alliance’s scientific planning committee.
Come hear the firsthand account of Cahalan’s swift descent into madness at age 24 and the brilliant diagnosis made by Dr. Najjar, nicknamed “Dr. House,” who saved her life. The event, open to the public, starts at 7pm at the American Tobacco Campus. Seating is limited to 100.
Autoimmune Encephalitis Alliance connects people and resources to find a cure for autoimmune encephalitis.
The AE Alliance is a 501c3 non-profit organization based in Durham, NC.