Don’t Be Left Behind. Keep Up With THE HERD!
Selected Highlighted News in the field of Autoimmune
Encephalitis January 2021 1st edition
In this Issue~
- *Announcements: February AE Awareness Month Guest Speakers, Virtual Art Show, Shop & Support IAES, AE Awareness Month Shirts/new Arrivals at the AE Warrior Store
- *Children’s Corner: Autoimmune encephalitis in children and adolescents, Happy Jar, Cognitive Exercises and Rehabilitation for All Ages
- *Most Popular Image Downloads: Standard Operating Procedure (SOP), AE Infographic Poster
- *COVID-19’s Impact on the AE Community: Q & A about COVID-19 mRNA Vaccines, COVID-19 vaccine myths debunked
- *Most Popular Visual: Dementia Warning Signs, Antibodies Associated with Autoimmune Epilepsy
- *Featured AE Articles: Autoimmune encephalitis: When your body attacks your brain, and people think you’re going mad, Immunotherapy in Probable autoimmune encephalitis without detected autoantibody
- *Clinician’s Corner: Relationship between serum NMDA receptor antibodies and response to antipsychotic treatment in first-episode psychosis
- *COVID-19 Clinician’s Corner: Dexamethasone in Hospitalized Patients with Covid-19 — Preliminary Report
- *Open Access: Pregnancy outcomes in anti-NMDA receptor encephalitis Case series
Announcements
February ~ is AE Awareness Month
Hear From the Experts
This year we are excited to announce that IAES will be hosting Zoom guest speaker presentations with experts addressing their specific area of focus. Belinda Lennox, DM FRCPsych, Professor of Psychiatry at Oxford Neuroscience will be presenting on Autoimmune Psychosis and autoimmune encephalitis. In 2019 Dr. Lennox was made the first woman Psychiatry Professor at Oxford. Dr. Lennox is a member of the IAES Medical Advisory Board. For 12 years Dr. Lennox has been saying that it is time that all patients with acute-onset psychosis are screened for autoimmune encephalitis. That lumbar puncture should be offered to all patients with new-onset acute psychosis as part of the broader evaluation of their mental and physical health. She has advocated that the time for cultural change in psychiatric practice is upon us. We encourage you to read ‘Time for a change of practice: the real-world value of testing for neuronal autoantibodies in acute first-episode psychosis’ and get to know her. Michael Sweeney, MD, Pediatric Neurologist assistant professor in the Division of Child Neurology at the University of Louisville, Kentucky will be presenting on Pediatric Autoimmune Encephalitis. He was the first pediatric neurologist to complete an autoimmune neurology fellowship at the University of Utah. Upon joining as faculty at the University of Louisville in 2016, he started the region’s first-ever clinic to treat children specifically with immune-mediated neurologic disorders. He also joined with colleagues in the Department of Neurology to start an adult autoimmune neurology clinic in conjunction with an established neuroimmunology program. Presentations will be made on separate days. Stay tuned for the finalized dates and times of these presentations. |
3rd Annual Virtual Art Show
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Ways to Shop & Support IAES
Have you wanted to support IAES, autoimmune encephalitis awareness, and the AE Warrior that you love? Have you found our services helpful? Do you want to make sure patients are identified early and that they and their loved ones receive the best help possible during this difficult journey? Here is an easy and affordable way to donate without feeling a thing when shopping with your Paypal account. Each time you check out you will be reminded that you can give $1 to IAES. |
AE Warrior Store New Arrivals
AE awareness t-shirt design 1
AE awareness t-shirt design 2
AE awareness t-shirt design 3
AE awareness t-shirt design back
ae warrior superpower
Keep ’em clean from COVID-19 hand sanitizer packet
Not Today Coronavirus Hand Sanitizer Packet
Autoimmune Encephalitis Warrior License Plate Frame
Description: Autoimmune Encephalitis Awareness Month, February 2021 2-sided designs. May be ordered in Men’s, Women’s, and Children’s sizes in a variety of styles including a hoodie, long sleeve shirts, and colors. Back reads: Autoimmune Encephalitis (AE): is a type of brain inflammation where the body’s immune system attacks healthy brain cells. Spread awareness with these stylish shirts. Wearing this shirt may begin a conversation that could lead to saving a life. The proceeds of your purchase will immediately support autoimmune encephalitis patients, caregivers, and families who are walking this difficult journey. Proceeds also go to support research that may one day lead to a cure. Other new arrivals are an AE Warrior What’s Your Superpower shirt with zebra art by Julia King, humorous hand sanitizer packets ideal for AE patients on immunosuppressant treatments, and an AE Warrior license plate frame. Visit #AE Warrior Gifts on the IAES website for some great ideas about how you can honor your AE Warrior or Caregiver during AE Awareness month. Many offerings there are free. Don’t forget to get a deck of AE Trivia Cards for your AE Warrior, family members, or your Neurologist. |
Children’s Corner
Autoimmune Encephalitis in Children and Adolescents
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Cognitive Exercises and Rehabilitation for All Ages
Here is a new set of cognitive rehabilitation worksheets, packet #30. They give AE patients the ability to practice and work on cognitive skills impacted by brain injury caused by autoimmune encephalitis. Courtesy of our friends at Happy Neuron. Mental movement is a complex cognitive skill needed in order to plan things out. It not only helps with visual-spatial skills but with the ability to organize information, make mental-visual comparisons, and overall decisions based upon order or comparison. In this worksheet, you receive 4 exercises to use to practice strategies related to mental movement. Whether it’s mentally moving a ball from one hoop to another, remembering where objects are placed, using language clues and space markers to complete a sentence, and/or mentally reflecting a pattern this packet has all of that and more. You will be exposed to different task requirements, all sharing the underlying component of mentally moving objects. This worksheet challenges: working memory, attention, visual-spatial skills, and language. |
Start 2021 with your version on a ‘Happy Jar’ |
Because battling autoimmune encephalitis is such a huge challenge, it’s difficult for us to remember the positive things we experience. So, we wanted to share this idea with all of you as a way to help you through difficult times. You can create your own version modeled after this one and, of course, you can dip into the jar and randomly read notes throughout the year when you could use a lift.
Some IAES members have created ‘grateful jars’ filled with what you are grateful for. Parents, family, and friends can fill a jar with notes of encouragement, praise, and comments about accomplishments. Maybe you decide to make a ‘happy memories’ jar. Be creative. You may decide everyone in the family can add to the jar. Think about what you need or your loved one would appreciate and create around that.
Most Popular Download
Standard Operating Procedure (SOP)
This standard operating procedure (SOP), published earlier this year, is based on existing diagnostic algorithms, treatment recommendations, and personal experiences, this SOP gives an overview of clinical presentation, diagnostic procedures, and therapy in AE.
Additional information is provided within an accompanying text and a table describing the most important autoantibodies and their characteristics.
AE Infographic Poster
COVID-19’s Impact on the AE Community
Q & A about COVID-19 Vaccines
Some of the most common questions people are asking about COVID-19 mRNA vaccines are presented in this helpful handout by the vaccine education center at Children’s Hospital of Philadelphia. If you do not see your question, you can submit questions to experts from the Vaccine Education Center at CHOP.
COVID-19 vaccine Myths Debunked
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Most Popular Visual~
Dementia Warning Signs
Featured AE Articles~
Autoimmune encephalitis: When your body attacks your brain, and people think you’re going mad
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Immunotherapy in Probable autoimmune encephalitis without detected autoantibody
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Clinician’s Corner
Relationship between serum NMDA receptor antibodies and response to antipsychotic treatment in first-episode psychosis
Tom Pollak, Ph.D., one of the authors of this paper, was able to give some input into this key study. “Some authors assume that because these antibodies can cause NMDAR encephalitis, First Episode Psychosis (FEP) patients with these antibodies might be less responsive to antipsychotic treatment or might experience more side-effects. We sought to test this within the tightly-controlled parameters of the OPTiMiSE trial. Almost 4% of FEP subjects had NMDAR abs. As a group, they had a shorter duration of psychosis, which is curious. But there was NO DIFFERENCE in initial symptom severity OR in response to 4 weeks of amisulpride treatment. Seropositive patients improved similarly to seronegative. There was also no difference in the frequency of reported AEs in the two groups. For immunotherapy to even be a consideration, further evidence of active Central Nervous System (CNS) inflammation (including cerebral spinal fluid (CSF) analysis and antibody testing, but also MRI and EEG) is essential. We didn’t perform CSF analysis in this study, but the next priority should be…to figure out what % of patients with serum NMDAR abs also have evidence of CNS inflammation – so far, estimates vary wildly, from 0% to 100% (as in this paper).” |
COVID-19 Clinician’s Corner
Dexamethasone in Hospitalized Patients with Covid-19 — Preliminary Report
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Pregnancy outcomes in anti-NMDAr encephalitis
Case series
This new research published by Dr. Dalmau and colleagues reports the effects of anti-NMDA receptor (NMDAR) encephalitis in pregnant patients and their babies. Conclusions Patients who develop anti-NMDAR encephalitis during pregnancy or become pregnant during recovery often have obstetrical complications, but most of the newborns are healthy and appear to have normal development. |
AE Trivia Playing Cards
The perfect companion for patients, Caregivers & Therapist
We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product.
During the COVID-19 pandemic, it is vitally important that you #StayHome and practice #SocialDistancing. Grocery shopping, as well as all shopping, should be done online.
When you shop Amazon Smiles and select IAES as the non-profit you want to support, Amazon will donate 5% of our purchases to the International Autoimmune Encephalitis Society.
The need for our services has increased exponentially. This simple act of kindness, will support the work we do and advance our ability to service the community.
Are YOU an IAES angel? Do you love someone with AE? Do you want to raise AE awareness to not just support AE Warriors but lead researchers to finding a cure? The IAES Angel is someone who lifted IAES upward by ensuring that comfort, guidance and improved health is brought into an AE patient’s life.
IAES Angels are motivated by their Spirit of giving. They are Champions in raising AE awareness. Your devotion to supporting our mission and improving the lives of those who suffer from AE is felt mightily and immediately put to use.
When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you this badge and profile frame to place on your Facebook page or Website. As badges ‘take flight’ heralding IAES has been ‘touched by an angel’, others will take notice and they too may find their wings. Together, we will create a future where AE is eradicated from this world and only referenced in medical history books.
International Autoimmune Encephalitis Society is proud to be a platinum level participant on the Guide Star exchange, demonstrating or commitment to financial transparency. IAES is a charitable non-profit 501 (c)(3) organization. Tax ID#81-3752344
Donations raised are greatly appreciated and directly support research, patients, caregivers, and families through their journey so the best outcomes can be reached. Your contribution to our mission will help save a life and improve the quality of lives for others. Be a part of the solution by supporting IAES.
Driven by the knowledge that “Education is Power”, Int’l AE Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones on Face Book, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.
