What We Do
The Autoimmune Encephalitis Alliance seeks to improve the lives of autoimmune encephalitis patients and their families through:
- Establishing autoimmune encephalitis clinical standards of care across medical disciplines,
- Coordinating basic and clinical research efforts, and
- Building community awareness and connect families so nobody faces autoimmune encephalitis alone.
We invite you to join us.
We have a lot of work ahead of us, and we don’t plan on doing it alone. Our first community event, Florence Forth, sold out with over 700 people in Durham joining us in a 10-mile race or 5-KM run/walk in support of the AE Alliance.
In January 2013, the AE Alliance helped organize a Grand Rounds at Duke University Medical Center in collaboration with the Department of Psychiatry and Behavioral Sciences and the Department of Pediatrics. Watch the video of the Grand Rounds titled “Patient and Clinician Perspectives on Autoimmune Encephalitis”.
We have more planned.
In 2013, we intend to begin making grants to clinical and science researchers who are on the frontiers of improving patient outcomes and finding a cure for autoimmune encephalitis.
Your continued support means the world to our community.
Who We Are
Leslie and Will McDow’s daughter, Florence, first became ill in 2008, at the age of two. After a heroic struggle including two bone marrow transplants, Florence died on March 4, 2012, at the age of six.
Helen and Daniel Egger’s son Sasha fell ill in 2009, at the age of 13, and has been hospitalized eight times since then, but is currently in remission.
In fall of 2012, the McDow and the Egger families came together with a shared vision of a different future for autoimmune encephalitis—a future in which information and community are powerful weapons. Where research on a cure is a priority, where collaboration between families, clinicians, and researchers will serve as a model of efficiency and mutual respect. A future where no family need face this disease alone.
We launched the AE Alliance in January 2013 to 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..
- Mailing Address
- 920 Urban Avenue, Durham, NC 27701