Advocacy

What Do You Know about Giving Tuesday and the AE Alliance? As Director of the AE Alliance, I first learned about autoimmune encephalitis and the Alliance three years ago and it was not until three months ago I began learning about GivingTuesday. Both organizations are doing good. Here’s a bit more detail about their histories, […]

The AE Alliance hosted the annual Florence Forth Race on March 3, 2018, drawing over 1100 runners and walkers. Some were AE survivors and their families from all over the nation and Canada. Cold weather did not dampen the spirits of participants as they ran, walked and cheered each other on for this fundraiser that […]

I am not a runner. I cringe at the thought of running. So naturally, when Susannah Cahalan told me about the Florence Forth Road Race in Durham NC, I was a bit skeptical. However, when she added that there would be fellow survivors of autoimmune encephalitis attending, I made my decision to go. There were […]

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 […]

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 […]

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 […]

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 […]

Dr. Ava Easton, a health scientist and researcher specializing in encephalitis, acquired brain injury, and neuro-narratives, and a friend of the Autoimmune Encephalitis Alliance, has recently published a book titled Life After Encephalitis: A Narrative Approach. We are grateful that she contacted us about sharing this important work with patients, friends, caregivers and the medical community. Life After Encephalitis provides […]

Over 150 patients and family members affected by autoimmune encephalitis gathered in Durham, NC, for a luncheon on March 5. Known simply as the “Family Lunch” the event is a chance to meet others affected by autoimmune encephalitis, laugh, celebrate, remember those lost to the disease, and share stories both privately and publicly. Having grown in […]

Susannah Cahalan, journalist and author of The New York Times best-selling book Brain on Fire, and board of directors’ member of the Autoimmune Encephalitis Alliance, gave the keynote address at the Fifth Schizophrenia International Research Society conference in Florence, Italy (the podcast link is below). She shared her story of being struck down, and recovering […]