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Today, December 17th, is the one year anniversary of the Autoimmune Encephalitis Alliance becoming a non-profit organization. 2013 was a wonderful year with many great events, including Florence Forth, Across the Starting Line, educational Grand Rounds and book readings and many amazing connections with families, patients and doctors. We look forward to working with all of […]
I am in awe of writers… their ability to choose the exact word to bring the emotion or feeling directly to the reader. I am there. I am her. I feel this about Sandra because she is a mom warrior. And not only that, but a mom warrior who is able to share her war […]
This post was sent to us by a young man who has a brother diagnosed with Autoimmune Encephalitis. You can share your story about AE. Please read on for a sibling perspective: June 10, 2013 marked my brother Sammy’s return from Duke after 8 long months. There were no balloons, parades or red carpet moments, […]
There are only five more months until FLORENCE FORTH 2014. We have been busy making plans for the second annual running of FLORENCE FORTH . And now it is your turn to join in the planning. Here are five easy steps to take: 1st: Save the Date. March 1, 2014 2nd: Get ready to register for FLORENCE FORTH on October 15th. Use promo code […]
Autoimmune Encephalitis Leypoldt F, Wandinger K-P, Bien CG, Dalmau J. European neurological review. 2013;8(1):31-37. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4910513/ The term autoimmune encephalitis is used to describe a group of disorders characterised by symptoms of limbic and extra-limbic dysfunction occurring in association with antibodies against synaptic antigens and proteins localised on the neuronal cell surface. Since many patients respond […]
We are hearing from many of you. Your stories fill me with passion to help families with this disease and fight to figure out a way to conquer it. But fighting is exhausting as we all know. And from somewhere inside of us, we keep finding a way to another path, another treatment, another doctor […]
I recently read an article about myself in the New York Times—well it wasn’t my name or my child but it was my story. Sandra Joy Stein wrote the article titled “Becoming the Parent With the Child in the Wheelchair.” I don’t know Ms. Stein personally, but I know her life. I had a young […]
The Autoimmune Encephalitis Alliance awarded its first grant to the Autoimmune Brain Disease Program at Duke University Children’s Hospital. Co-directors of the Program, Dr. William Gallentine, Pediatric Neurology and Dr. Heather van Mater, Pediactric Rhuematology, accepted the grant and will use the funding to advance their ground-breaking, multidisciplinary clinic and related research. The $11,000 grant […]
On July 11, 2013, the Autoimmune Encephalitis Alliance hosted the NC Premiere of Across the Starting Line, a Short Film, and Book Reading by Susannah Cahalan, Author of Brain on Fire. The event was held in Durham, NC at the Full Frame Theater at American Tobacco Campus, a boutique theater built in collaboration with Duke […]
Our family has always been a running family. A jogging stroller lived on our porch or dining room for years. We ran when full time jobs became stressful, while Laura and Florence napped as babies, and just exercising our dog. When Florence fell ill with an unknown disease at age two, we increased our running […]