AE Alliance Blog

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.

It’s Our 1st Anniversary

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 …

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Sharing A Story- A Brother’s Homecoming

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, …

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Save the Date – March 1, 2014 – Florence Forth Road Race

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 …

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Autoimmune Encephalitis

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 …

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Encephalitis groups focusing on AE

In a sign of the rising awareness of autoimmune encephalitis (AE), several encephalitis focused groups are expanding their work to include AE. Next week, Leslie and I are heading to New York to meet with members of the larger Encephalitis community.  The Encephalitis Society, a UK based group, has called multiple groups together to discuss how …

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AE makes us “wiser, wearier and stronger”

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 …

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