The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.
The Autoimmune Encephalitis Alliance is participating in the 8th annual “Brain Awareness Week at Duke.” AEA will be tabling on Sunday, April 3, from 1 p.m. – 4 p.m. at the first ever Duke Institute for Brain Sciences (a.k.a.”DIBS)” Discovery Day. Join us in their new 10,000+ square-foot space for laboratory demonstrations, to learn how music can improve quality …
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 …
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 …
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 …
We’ve had quite a few informative and serious blogs posts over the past couple of months so now it is time for some fun. Need more reasons to participate in Florence Forth? Well, here ya go: Time to cash in that “free back rub” coupon your significant other gave you for Valentine’s Day. Come run …
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 …
“Miracle Flights for Kids” is a Las Vegas based non-profit that provides free medical flight to kids and their families to see specialized caregivers and to seek second opinions. Miracle Flights contacted AEA last year and asked if we would help spread the word about their work. Their mission is “to improve access to health care by …
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 …
As part of UNC’s School of Medicine, the “Program on Integrative Medicine,” is offering a five week course titled “The Immunology of Autoimmune Disease, Inflammation and Chronic Infection: A Research-Based Functional Medicine Perspective.” WEDNESDAYS: 6:30pm-8:30pm, February 17– March 16, 2016. ***Please note change in course dates*** Taught by Dr. Sam Yanuck, whose functional medicine practice …
