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.
Every month the Transverse Myelitis Association holds a podcast on a topic that affects those with rare neuro-immune disorders. Experts in the field share the latest knowledge and answer questions from their community. On Thursday January 17th the podcast will cover Autoimmune Encephalitis and other rare autoimmune disorders. The Experts for this session are Dr. Michael Bradshaw …
Researchers at Johns Hopkins University published a retrospective study in which they examined the PET scans of patients who had been definitively diagnosed with autoimmune encephalitis over a ten-year period. They compared patients with anti-NMDA receptor encephalitis with other subgroups. They found those with anti-NMDAr AE consistently showed abnormalities in the form of hypometabolism (lower …
You are invited to join us on March 2, 2019 for the AE Family Weekend in Durham, NC. Meet other families going through similar challenges. Share stories and learn about the latest treatments and discover strategies to make every day better. Meet with experts in the field of Autoimmune Encephalitis. There is plenty of time …
In the past few weeks we have had some amazing people raise awareness for Autoimmune Encephalitis and raise funds for the AE Alliance, so we can continue to invest in research and improve clinical care. Let’s start in New York City. A friend of one of NYU’s hockey players got diagnosed in the spring with …
A study just published in the Journal of Neurology, conducted at 5 hospitals (4 Germany, 1 Austria) reported admission diagnosis in AE patients is still proving a challenge. The physicians attributed this to the fact that initial symptoms vary widely, causing the correct diagnosis to be delayed or even missed. They looked back at 50 …
In 2015 my daughter Marie was entering 7th grade. She was very nervous over the summer prior to entering the new school. The first 4 weeks of school she skipped out on doing her homework and participation in classes. When I confronted Marie she told me that going to the Math resource room was making …
With Thanksgiving upon us in the US and the holiday season approaching, here at the Autoimmune Encephalitis Alliance we want to take a few minutes to express our heartfelt gratitude to the many people who make fighting this rare illness possible: Thank you to the people affected by AE and their families and friends, who …
A group of talented local high school students from The Fine Arts Center will be holding “Play It FWD” …Kids with a Purpose on December 2nd to raise funds for The Autoimmune Encephalitis Alliance. “Play it FWD” will be an annual live music event with the purpose to support a nonprofit organization of the students’ choice …
We are honored to have friends at the Encephalitis Society in the UK, who provide support for the community of people who have experienced all types of encephalitis. Chief Executive, Dr. Ava Easton, has recently published an article entitled “Treating encephalitis in primary care settings” in the Independent Nurse. She provided a summary of the …
Physicians conducting research in Barcelona are using high-resolution microscopy and biochemical methods to unlock the secrets surrounding how anti-NMDA receptor antibodies cause disruption at the cellular level, resulting in the alteration of brain function. Dalmau and colleagues have discovered that under laboratory conditions, “NMDARs form nano-objects on the neuronal surface.” Patients with AE have developed …
