The Autoimmune Encephalitis Alliance was started by families and patients affected by autoimmune encephalitis. Founded in 2012 the AE Alliance is a 501(c)(3) non-profit organization based in Durham North Carolina.
The Autoimmune Encephalitis (AE) Alliance strives to educate physicians in evidence-based best practices for the diagnosis and treatment of AE. Successful patient care requires a collaborative, interdisciplinary approach.
The AE Alliance endeavors to establish a supportive community of patients, families and caregivers, so that no one faces autoimmune encephalitis alone.
The AE Alliance works to facilitate scientific research into the causes of AE and its treatment, with confidence that a cure will be found.
Leslie and Will McDow’s daughter Florence first exhibited symptoms of autoimmune encephalitis in 2008, at the age of 2. After a four year struggle that eventually included two bone marrow transplants, Florence died on March 4, 2012, at the age of six.
Helen and Daniel Egger’s son Sasha fell ill with autoimmune encephalitis in 2009, at the age of 13, and has been hospitalized eight times since then, but is currently in remission. Read about Sasha in the words of his father, brothers, and sister.
Susannah Cahalan was diagnosed with anti-NMDA-receptor autoimmune encephalitis in 2009. She chronicled her experience in the New York Times bestselling book “Brain on Fire: My Month of Madness.” She introduced the McDow and Egger families in 2012.
We came together in the fall of 2012 with a shared vision of a different future for autoimmune encephalitis. We envision a future in which information and community are powerful weapons, where advanced care leads to a cure, where collaboration between families, clinicians, and researchers serves as a model of efficiency and mutual respect, and where no family need face this disease alone.
We launched the Alliance in December 2012 to help catalyze this future: to change how patients with autoimmune encephalitis are diagnosed and treated, to support families coping with the disease, and to promote new scientific and clinical research that will lead in time to a cure. We are at the starting line of a new race. Join us in creating a new future for autoimmune encephalitis care.