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.

Evaluation of seizure treatment in AE

In this nationwide cohort study, by De Bruijn and colleagues, the authors evaluated the seizure responses to immunotherapy and anti-epileptic drugs (AED’s) in patients with NMDAR, LGI1, and GABAbR encephalitis. The study included 153 patients with AE (53 LGI1, 75 NMDAR, 25 GABABR). Of those, 110 patients had epileptic seizures and were included in the …

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What is AE?

‘What is AE?’, seems like an easy question to answer, right? AE refers to conditions where the body’s immune system, whose job is to fight infection, mistakenly attacks healthy brain cells causing neurologic and psychiatric symptoms. But what does that really mean? And what if you or a loved one gets this diagnosis and everything …

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Research continues on BBB involvement in AE

The blood-brain barrier (BBB) is a highly selective barrier formed by endothelial cells connected by tight junctions that separate circulating blood from the brain. An intact BBB prevents many micro- and macromolecules and immune cells from entering the brain in order to protect and maintain an optimal level of essential nutrients and neurotransmitters. There has …

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Tocilizumab in AE

This week the FDA approved the initiation of a  phase III clinical trial of the oncology supportive care drug Tocilizumab (Actemra – Genentech) for the treatment of hospitalized adult patients with severe COVID-19 pneumonia. Tocilizumab is a humanized anti-interleukin (IL)-6 receptor monoclonal antibody, which blocks IL-6-mediated signal transduction. Given the crucial role of IL-6 in stimulating …

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You are not alone

To our AE Alliance family and friends, In these unsettling days requiring extraordinary measures to safeguard against COVID-19, we, at the AE Alliance, are more concerned than ever for your wellbeing.  From its outset, there has been uncertainty, confusion, and anxiety about this virus.  Disruptions to our daily lives are unprecedented and information is rapidly …

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Ask me about AE

Today is Rare Disease Day and the kick-off of our ‘Ask me about AE’ campaign. Each year, Rare Disease Day takes place on the last day of February. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Like …

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Andrew’s Race

We are excited to announce that starting today, on World Encephalitis Day, we will be following Andrew as he prepares for the Ironman 70.3 race in Victoria, B.C. on May 31. Andrew is an AE survivor and wants to raise awareness. He already writes about his life with AE on his own blog and he …

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#Red4Wed

One more week until World Encephalitis Day. Let’s all raise awareness for Autoimmune Encephalitis because far too often people with AE still go undiagnosed or misdiagnosed. World Encephalitis Day, founded by the Encephalitis Society in the UK, is the global awareness day for people who have been directly or indirectly affected by encephalitis. This day …

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It’s that time of year

Wow, just like that…, 2020 is here and my family and I find ourselves preparing for another Florence Forth and AE Alliance Family weekend.  Approximately 20 of our family and friends will make the trip again this year to Durham from all over the country for Florence Forth, Saturday, March 7th.  I can’t wait to …

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