The Autoimmune Encephalitis Alliance was launched by families 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 autoimmune encephalitis symptoms in 2008 as a two-year-old. 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 thirteen, and has been hospitalized eight times since then. Currently, Sasha is in remission.
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,” which later became a popular film, “Brain on Fire.” Susannah introduced the McDow and Egger families in 2012.
The McDows and Eggers came together in 2012 with a shared vision of a different future for people facing autoimmune encephalitis. They envisioned a time when information and community, both powerful weapons, would be readily available to anyone suffering from this disease. They sought a future in which advanced care could lead to a cure, where collaboration between families, clinicians, and researchers serves as a model of efficiency and mutual respect, and where no family faced this disease alone.
In December of 2012, the Alliance emerged from these collaborations to help catalyze this future: to change the patient experience; to accelerate diagnosis and improve treatments, support families coping with the disease, and promote scientific and clinical research that will eventually lead to a cure. Since our inception, we have made significant progress toward this vision. There remains much to be done. Please join us in creating a new future for autoimmune encephalitis care.