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Selected Highlighted News in the field of Autoimmune Encephalitis~ January 2023 AE Awareness Month Events Announced
In this Issue~
- *Announcements: AE Awareness Month Merchandise, Virtual Art Show Submissions,The ExTINGUISH Trial, The IGNITE Study
- *AE Awareness Month Speakers Series: Meet the Presenters. All webinars are free & open to the public. Register early to ensure a seat.
- *ABI Rehabilitation From AE: Faith, Hope, Love & Bravery coloring page, New Year’s Resolution Mad Libs
- *Raise Sweet Awareness: AE Warrior Candy bars
- *Start 2023 with Your Version of a ‘Happy Jar’
- *Well-Being Gratitude Journal
- *AE Trivia Cards: The single most important educational/rehabilitation tool for AE
- *AE Warrior Store: See our new AE Wingman and hat collections
- *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles
AE Awareness Month Merchandise
Join us all by raising awareness for Autoimmune Encephalitis throughout the month of February by wearing this stylishly designed T-shirt or Hoodie. The #BrainOnFire design lists several of the most common symptoms seen in Autoimmune Encephalitis and each symptom is placed in the area of the brain where that symptom is controlled. The back of the shirt reads: Autoimmune Encephalitis (AE): is a type of brain inflammation where the body’s immune system attacks healthy brain cells.
Wearing this shirt may start an important conversation.
The AE Warrior Store provides merchandise that raises awareness of AE and helps to educate the public. The inventory we supply is selected with love and care to enhance your health, and personal comfort and empower you as a dedicated advocate to improve the lives of people touched by AE. Join our AE Family. Shop our AE Warrior Store today. Help us continue our mission to support patients, families, and caregivers while they walk this difficult journey.
Proceeds also go to support research that will someday lead to a cure.
Submit Your Art For the Virtual Art Show
This is the first-ever Clinical Trial for a promising new drug, Inebilizumab, to treat anti-NMDA receptor encephalitis, and will be funded by the National Institutes of Health (NIH).
The trial will start recruitment in January 2022. International Autoimmune Encephalitis Society is honored to be supporting the ExTINGUISH trial along with Autoimmune Encephalitis Alliance and The anti-NMDA Receptor Encephalitis Foundation.
Main Inclusion Criteria (in part)
Enrollment is limited to 116 newly diagnosed patients with a confirmed diagnosis of anti-NMDAR Encephalitis who are 18 years or older. Patients must have received at least 3 days of methylprednisolone 1000 mg IV or equivalent corticosteroid within 30 days prior to randomization (Day 1). In addition, patients must have received EITHER of the following treatments within 30 days before randomization.
- IVIg, at a minimum dose of 2 g/kg
- Plasma exchange or plasmapheresis, with a minimum of 5 treatments. NOTE: These treatments may be provided during the screening period, but must be completed prior to randomization.
mRS of ≥3 at the screening visit, indicating at least moderate disability. Ability and willingness to attend study visits and complete the study.
The IGNITE Trial
Drs. Emmanuel Mignot and Sergio Muñiz-Castrillo and their research group at Stanford University in California have requested IAES’s help in recruiting autoimmune encephalitis patients for The IGNITE study. This study aims to investigate the genetic predisposition to autoimmune encephalitis and related disorders. Patients must have an identified antibody to participate. The patient may have an active case or be in remission. This exciting study includes patients of all ages and all antibodies. Patients outside of the United States will need the physician who diagnosed them, usually a neurologist, to contact Dr. Muñiz-Castrillo directly. No travel is involved. Saliva and blood kits will be sent to you in the mail and can be returned by mail or dropped off at named participating pharmacies.
Your participation will help uncover that answer and your act of advocacy will eventually enhance lives! The first step to take is to fill out and submit the screening survey below.
Seronegative/antibody-negative patients can play an active advocacy role by distributing the IGNITE study flyer to their diagnosing doctor, and asking that it be posted at the infusion center you use, as well as at hospitals and clinics you visit.
Sharing the flyer on your social media platforms will assist us in getting the highest level of participation possible.
AE Awareness Month
Speakers Series 2023
Dr. Cree will be giving an overview of autoimmune encephalitis with a focus on treatments. Dr. Cree completed his MD and Ph.D. in Biochemistry at UCSF. His neurology residency training was at Columbia University. He returned to UCSF for a Sylvia Lawry National Multiple Sclerosis Society fellowship and received a Masters in Advanced Studies in Clinical Research. He is the Clinical Research Director at the UCSF MS Center. He divides his time between patient care, clinical research, and teaching.
Don’t miss this rare opportunity. Dr. Marianna Spatola is an MD Ph.D. and trained Neurologist. Her research is focused on autoimmune neurological disorders, with a particular interest in understanding the pathogenic mechanisms of antibody-mediated encephalitis, and the contribution of viral infections in triggering brain autoimmunity. She is the author of 30+ publications in peer-reviewed journals such as Neurology, Brain, Lancet Neurology, Nature Communications, and a book chapter of the “Neuroimmunology” textbook published by Springer Nature in 2021. She works as a Clinical Neuroimmunology at IDIBAPS (August Pi i Sunyer Biomedical Research Institute), Neuroimmunology laboratory (Head Prof. J Dalmau), and University Clinical Hospital (Head Prof. F Graus), in Barcelona, Spain.
A broad range of disorders are misdiagnosed as autoimmune encephalitis and misdiagnosis occur in many settings including at specialized centers. Dr. Flanagan will review his et al recently published work, a case series of 107 outpatients misdiagnosed with autoimmune encephalitis. Identified red flags suggesting alternative diagnoses included an insidious onset, positive nonspecific serum antibody, and failure to fulfill autoimmune encephalitis diagnostic criteria. Autoimmune encephalitis misdiagnosis leads to morbidity from unnecessary immunotherapies and delayed treatment of the correct diagnosis.
Eoin P. Flanagan, M.B., B.Ch., is a neurologist who conducts research in transverse myelitis, neuromyelitis optica spectrum disorders, paraneoplastic and other autoimmune neurological disorders of the central nervous system. He has additional research interests in multiple sclerosis and spinal cord sarcoidosis. Dr. Flanagan studies the epidemiology, clinical and radiologic features and treatment responses of autoimmune and paraneoplastic diseases of the central nervous system, including autoimmune dementia and autoimmune encephalitis. The goal of Dr. Flanagan’s research is to allow physicians to diagnose underlying causes of spinal cord disease more quickly and accurately. Early accurate diagnosis and treatment of spinal cord disease reduces disability and complications from delay in diagnosis or incorrect treatments.
IAES owes our debt of gratitude to Dr. Santoro, as he is making time while on sabbatical to be with us for this presentation. (An example of his passion and commitment to his patients). A MUST attend to any parent or colleague.
Dr. Santoro completed his undergraduate, masters, & medical degrees at Tulane University. He subsequently completed residencies in pediatrics and child neurology at Stanford University School of Medicine & subsequently had sub-specialty training in neuroimmunology & pediatric MS at Harvard Medical School. Dr. Santoro is a passionate clinician-scientist who has published over 50 peer-reviewed manuscripts. Santoro is one of only a handful of national clinician-scientists who treats neurologic disorders associated with Down syndrome. Clinical Interests Acute Disseminated Encephalomyelitis (ADEM), Pediatric Multiple Sclerosis, Neuromyelitis Optica Spectrum Disorders, MOG Antibody Syndrome, Anti-NMDA Receptor Encephalitis, Optic Neuritis Transverse Myelitis, Neurologic Disorders Associated With Down Syndrome, Bickerstaff’s Brainstem Encephalitis, GQ1b Antibody Mediated Disorders, Autoimmune Encephalitis Hashimoto’s Encephalitis, and Down Syndrome Regression Disorder.
Grace Tworek, Psy.D. of the Cleveland Clinic has identified a neglected need in the AE community and is blazing a trail by developing much-needed services and support for patients and families. Enjoy her passion and the positive goals she sets for our patients and families. There will be a Q & A period at the end of the presentation.
Dr. Tworek is a clinical health psychologist at the Cleveland Clinic in Cleveland, OH. She completed her graduate training at Nova Southeastern University in South Florida, where she developed a passion for health psychology and providing psychology services to those managing medical diagnoses. She completed her fellowship within the Mellen Center for Multiple Sclerosis at the Cleveland Clinic. It was through working with the dedicated team of neurologists at CCF that she developed a passion for the unique needs and opportunities to provide support and therapeutic services to those diagnosed with autoimmune encephalitis. Through the support of the Mellen center, she is working toward expanding behavioral medicine services to the AE patient population to include inpatient hospitalizations, outpatient follow up, and caregiver support.
Dr. Claude Steriade is a neurologist in New York, NY, and is affiliated with NYU Langone Hospitals. She graduated from Geneva General Hospital/Marion Whelan School of Nursing in 2011. She received her medical degree from McGill University Faculty of Medicine and has been in practice for 6 years. (with 11 years of experience in the medical field). She specializes in epilepsy.
ABI Rehabilitation From AE
Faith, Hope, Love, and Bravery
Adult Coloring Page
Adult coloring alleviates signs of stress and depression. Coloring reduces stress by activating the brain’s right hemisphere. When we are stressed or worried, we activate the left side of our brain, which is responsible for analytical and cognitive processes, but when we color, we switch gears and access the right side of the brain, the creative, artistic region, which quiets the left part, allows creativity to take over and blocks out worries.
Like meditation, coloring promotes relaxation by focusing the brain on the present moment. When patients color, they engage in the ‘here and now’ and practice mindfulness, which can be a very meditative and relaxing process. Because they’re occupied with thoughts such as ‘what color do I use?’ and ‘how should I color this part?,’ their right brain can relax and give them a break from difficult thoughts about procedures, their diagnosis, pain and the like. Art is a nonverbal way of processing all of these difficult feelings.
New Year’s Resolution Mad Libs
Raise Sweet Awareness
Create A Fundraiser or Simply Raise Sweet AE Awareness Among Family and Friends During February
#AEWarrior chocolate bar wrappers with inspirational messages your friends, family, co-workers, and fellow students will love.
- Download: paper wrapper
- Wrapper: 5 9/16” x 5 3/8”
- Fits 1.55oz Hershey’s Milk Chocolate Bar, 1.45oz Hershey’s Dark Chocolate Bar, & 1.6oz Belgian Milk Chocolate Embossed Bar
- Candy not included
Purchase the candy bars. Download, print (for best results center image) and cut out the wrapper.
*Additional free gifts are offered on the AE Warrior Gifts page. Get inspired and start creating gifts for people on your holiday gift list.
Start 2023 with Your Version of a ‘Happy Jar’
The Well-Being Gratitude Journal
Utilize the journal by challenging yourself to a 21-day commitment described. Spend two minutes a day scanning the world for three new things you’re grateful for over a 21-day period. We instinctively scan our environment for threats. This powerful exercise trains your brain to scan the world in a new pattern of scanning for positives. It’s the fastest way to teach optimism.
We are all capable of learning new behaviors and changing our brain patterns. Research has shown that a person with a low-level of pessimism on day 1 of this 21-day exercise will admit to feeling a low-level of optimism by day 21. When dealing with a life challenge as overwhelming as AE, it is important to take care of your mental health, feel supported in your ability to manage the crisis and feel empowered and truly resilient.
The Journal has a left-hand margin width for a 3-hole punch, so it can be inserted into a notebook. Coloring has been shown through research to mitigate symptoms of physical and emotional distress and is a recommended rehabilitation activity for AE patients. Color in the cover design to personalize your journal while relaxing into a pleasant past time.
AE Trivia Playing Cards
The perfect companion for patients, caregivers & therapists
We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product.
Shop & Support IAES Through PayPal’s
Get that great deal online and support IAES at the same time!
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.
This simple act of kindness, will support the work we do and advance our ability to service the community. MakeMeSmile is an extension for Chrome that makes sure you select International Autoimmune Encephalitis Society when you shop online. It’s free to download. And you don’t even need to sign up.
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.
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.