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.

Dr. Jenny Frankovich discusses Pediatric Acute Onset Neuropsychiatric Syndromes (PANS)

Dr. Jenny Frankovich Clinical Assistant Professor, Pediatric Rheumatology, Stanford University The Autoimmune Encephalitis Alliance hosted a series of Autoimmune Encephalitis awareness events at Duke University Medical Center, March 26 and 27, 2014.  International experts participated in grand rounds, lectures and panel discussions.  All of the educational videos from the events can be viewed on the AE Alliance website.

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Dr. Eric Lancaster discusses The uses and misuses of titers in autoimmune encephalitis

Dr. Eric Lancaster Assistant Professor of Neurology, Perelman School of Medicine, University of Pennsylvania   The Autoimmune Encephalitis Alliance hosted a series of Autoimmune Encephalitis awareness events at Duke University Medical Center, March 26 and 27, 2014.  International experts participated in grand rounds, lectures and panel discussions.  All of the educational videos from the events can be viewed on …

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International Experts Gathering in Durham, NC to Discuss Cure for Rare Disease

First Annual International Autoimmune Encephalitis Symposium, March 27-28, 2014 On March 27th, doctors and scientists from across the US and the world will gather for a two day AE Symposium, the goal of which is to improve the diagnosis, treatment and care for children and adults with autoimmune encephalitis (AE) and advance research towards a …

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Valentine’s Day

Most of our attention over the past 6 – 8 weeks have been directed towards the Florence Forth road race.  Today we wanted to offer a trip down memory lane from Valentines Day 2012. Happy Valentines Day Two years ago, Leslie and Florence’s Pops combined to write this blog post. This was Florence’s last big …

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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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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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