Blog

Nearly 2000 runners, walkers, family members, volunteers, and supporters of all ages came out on Saturday to participate in the 4th annual Florence Forth Road Race to benefit the Autoimmune Encephalitis Alliance. Held in Durham, North Carolina, participants traveled from as far away as Germany, Colorado, Canada, Nebraska, Indiana, and California to be a part of […]

Today The Lancet released an important paper from Dr. Dalmau et al., providing the first broadly accepted criteria for diagnosing autoimmune encephalitis. Included in the paper are guidelines for diagnosing anti-body negative AE, a frustratingly difficult subset of AE cases to diagnose and thus treat. Many of the paper’s authors attended the International Symposium on Autoimmune […]

World Encephalitis Day is February, 22, each year – just remember 222. This is a day for all of us affected by encephalitis, whether we are patients, family members, doctors, researchers, or caregivers, to come together and talk about our experiences with brain inflammation and the many forms it takes. While we at the Autoimmune […]

Hailey Bekos and her family star alongside Cody Calafiore, a former contestant from CBS’s “Big Brother,” to promote Philadelphia’s Ronald McDonald House. Hailey is a 15 year old recovering from autoimmune encephalitis. When she first contracted the disease two years ago she lost the ability to walk, talk, and control her body. Now, thanks to treatment […]

The diagnosis and treatment of autoimmune encephalitis Eric Lancaster J Clin Neurol. 2016 Jan; 12(1): 1-13. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712273/ Autoimmune encephalitis causes subacute deficits of memory and cognition, often followed by suppressed level of consciousness or coma. A careful history and examination may show early clues to particular autoimmune causes, such as neuromyotonia, hyperekplexia, psychosis, dystonia, or […]

If you are reading this you already know that autoimmune encephalitis can be an isolating experience. That’s one reason the Autoimmune Encephalitis Alliance organizes and hosts the AE Family Lunch in association with the Florence Forth run-walk in Durham, NC. This year the AE Family Lunch will take place on March 5, 2016. All AE patients and families […]

As we begin a new year we want to share a story with you. It is the story of a cute Colorado kid named Rama. We hope the detailed experiences of Rama and his family will offer personal insights that each of us can understand.  The family moves from confusion to diagnosis to care to healing […]

As we are in the midst of the holiday season, what better way to celebrate than with a survivor’s story. We are grateful for Brittany’s willingness to write about her illness trusting that it might give some peace (especially this time of year) to the AEA community. MY DARK WINTER By: Brittany DiCapua They say that […]

The AE Alliance turns 3 years old today!  Three years ago on this date, two families that had kids with AE came together in hopes that they could start something to help others suffering from this little-understood disease.  The vision was to not only disseminate information to help patients but also to give support to […]

The Autoimmune Encephalitis Alliance is holding a strategic meeting on December 15.  The board of directors and invited advisors are gathering in Durham, NC, with the goal of the thinking strategically regarding the organization.  Based on this group’s recommendations, we expect to continue to set up structures that will empower the AE Alliance to increase […]