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January 2022, 2nd issue
AE Awareness Month Events #BelieveYouCan
In this Issue~
- *Announcements: AE Awareness Month Merchandise, Virtual Art Show Submissions, LGI1 Research Survey, The ExTINGUISH Trial, #AETuesdayTries
- *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: #BelieveYouCan coloring page
- *Your Story is Newsworthy: How to get your Story in the News
- *Raise Sweet Awareness: AE Warrior Candy bars
- *Letter to my “Before AE Self”: Learn how to participate. Certificate of Recognition given for every Submission
- *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
#BelieveYouCan is the 2022 theme for Autoimmune Encephalitis Awareness Month, February 2022. Feel empowered in believing you can recover from AE, and create change in the world that raises awareness leading to a cure.
These products may begin a conversation that could lead to saving a life.
To spread awareness during the month of February, use hashtags #BelieveYouCan #AEawareMonth #BeAEaware on all your social media platforms.
The proceeds of your purchase support AE research and will have an immediate positive impact on patients, caregivers, and families who are fighting this rare brain disease.
Submit Your Art For the Virtual Art Show
2022 is our 4th annual Virtual Art Show. Anyone can submit art and your art can take any form. Photography (submit a favorite photo), music, poems, pencil, coloring, fabric, yarn, a meme you create, paint, drawings, clay, a picture of your tatoo, crafts of all kinds…the sky is the limit as to how you want to express yourself and share with others. It may or may not be directly related to how AE has affected your life. Share what has meaning to you.
LGI1 Research Survey
If you live in the United States, United Kingdom,
Spain or Germany, please enroll!
A Pharma company wants to understand what the journey of an Anti-LGI1 Autoimmune Encephalitis patient is like and needs your help!
The research has two parts: an online survey and a one-hour telephone interview. It addresses both patients and/or carers and you will be financially reimbursed for your time.
This is a GOLDEN opportunity for you to assist a Pharma company interested in developing new treatments for LGI1 patients directly. It is vital that they understand our AE journey and struggle! YOUR input will drive future progress for yourself and patients who will receive this diagnosis in the future. You can be a catalyst for change!
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.
IAES wants to foster your capacity in the belief that better days are ahead! “Tuesday Tries” is about practicing a strengths-based approach by “normalizing the try;” celebrating critical milestones in the recovery and care of AE patients and caregivers in order to build a more resilient network of care.
A workbook organizer, “Growing Your Resilience” has been created to accompany the #AETuesdayTries program and is located on the ‘Apps and Tools for AE Warriors’ page in the section: ‘Building Your Resilience’ on the IAES website under the ‘For Patients’ tab. A link to download the organizer is also provided within your e-mail confirmation when you register.
The next monthly #AETuesdayTries zoom meet-up will take place January 25th and will always be the last Tuesday of each month. Join AE patients and caregivers of all ages and stages in their AE journey. Receive insights and encouragement from others and celebrate your critical milestones in recovery and care while building a more resilient personal AE network!
Your facilitator, Tessa McKenzie, IAES’ Chief Resilience Officer, is a life coach and studies “resilience” through her private practice, Envisage Vocation Creation and work with Johns Hopkins University’s Life Design Lab. Join Tessa and other AE patients and caregivers who are ready to “Share Your Try Tuesdays”. Tessa will provide prompts for the reframe of perceived failures as well as peer-to-peer validation of “wins” and opportunities for relationship building.
AE Awareness Month
Speakers Series 2022
“Early treatment and best outcomes for autoimmune encephalitis in children is a topic that is widely ignored.”, Dr. Lim commented when asked if he would present on this topic. “Focus is usually centered on a specific type of AE.”, he stated. Dr. Lim will be presenting on published data and research that is currently in press on the topic.
Dr. Abbatemarco will discuss why seeing an expert in AE is important and the best practice model of how the neurologist acts as a team leader for the other professionals that make up the multidisciplinary team for long-term care and rehabilitation. What supports should ideally be in place when the patient is discharged from the hospital. Understanding the roles of team members and how they assist the patient and caregiver in navigating their AE journey. Defining the ‘recovery’ phase.
Dr. Monif will present an overview of antibody-mediated Autoimmune Encephalitis including antibody negative (seronegative) patients in her presentation. The treatments used in this group of diseases will also be reviewed.
Dr. Finke will report on his study which presents comprehensive longitudinal data for the cognitive outcome in NMDAR encephalitis. All patients had cognitive deficits about 2 years after disease onset, mainly affecting memory and executive function. After 4 years, moderate or severe cognitive deficits persisted in 2/3 of patients despite good functional neurological outcome. Impaired cognitive outcome was predicted by delayed treatment and higher disease severity. However, continued improvement of cognitive function was observed for several years after disease onset in some patients.
These deficits show a slow and incomplete recovery and persist beyond recovery of other neuropsychiatric symptoms of the disease. Rapid diagnosis and treatment as well as continued and customized cognitive rehabilitation improve the long-term outcome.
Autoimmune encephalitis is an emerging and unique clinical entity that causes severe neuropsychiatric symptoms and results in significant morbidity and mortality. Because it can present with a wide variety of neurologic and psychiatric manifestations, often indistinguishable from other more common neuropsychiatric syndromes, that cause behavioral disturbance, it can often be a very challenging diagnosis for clinicians to make.
Dr. Deng’s presentation will outline the red flags psychiatrists, clinicians and laypeople should be aware of that would indicate autoimmune encephalitis could be the culprit to first episode of psychosis (FEP). One of the diagnostic challenges that happens in autoimmune encephalitis is that demographically it often maps directly on the age ranges of first break psychosis. A sensitive and common issue is that many doctors, patients and families are led to view psychiatric illness and encephalitis as mutually exclusive issues, when the reality is that encephalitis very much includes psychiatric illness and requires psychiatric treatment, in addition to neurologic treatment. Many families and patients experience delays in care or, even inappropriate care. Ideally, these two specialties should be working in tandem with the emphasis that both neurologic care and psychiatric care occurs with all autoimmune encephalitis patients.
ABI Rehabilitation From AE
#BelieveYouCan with Faith, Hope, Love and Bravery
#BelieveYouCan Adult Coloring Page
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.
Get Your Story in the News
IAES has done the work for you. Download our press release and directions. Reporters can make use of the quotes from experts cited in the press release to enhance any article. Additionally, you can provide any writer with the contact information for the doctor who diagnosed you. Make sure you contact your doctor to confirm that they would be open to discuss your case with a reporter for a human interest or health story. Personal stories about AE patients and their journey are the best way to raise awareness broadly and on a much larger scale. It involves a few simple steps. Contact local and national newspapers as well as popular magazines such as People, Time and Newsweek.
Raise Sweet Awareness
Create A Fundraiser or Simply Raise Sweet AE Awareness Among Family and Friends During February
- 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.
Letter to My “Before AE Self”~
Each Participant will Receive a
Certificate of Recognition
Hello AE Family,
February, AE awareness month, will be here before you know it. This year IAES has adopted the theme #BelieveYouCan. In that spirit, we are inviting all of you to participate in raising awareness by writing a letter to your ‘before AE self’.
Your letters will be published in the IAES blog during AE awareness month. Everyone who participates will receive a beautiful certificate of recognition (see sample below). The IAES Blog team will assist with editing your work if you require support and will give you final approval of your submission prior to publication.
If you were to write a letter to the ‘you’ before you got AE, what would you want that ‘you’ to know?
My letter to myself changes daily and monthly but the main thoughts usually remain the same.
Mostly, I would say: “Dear Jeri, you don’t know this yet, but you really do not need to sweat the small stuff, love unconditionally, there may be a rough road ahead but, you, Jeri, are going to make it and be grateful for it.”
To be honest there have been times when this letter to myself may be more of a rant against AE. Like I said, it varies as does all our individual AE paths and stories.
Help open the eyes, hearts and minds of the public and medical community via your powerful letter to your ‘before AE self’. We are extending submissions until January 31st. Send your letters to me, Jeri Gore, Editor-in-Chief, IAES Blog Division e-mail: firstname.lastname@example.org
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.
AE Warrior Store
New Arrivals ~ The #BelieveYouCan AE Awareness Month 2022 Collection
|New arrivals at The AE Warrior Store. We are pleased to present ~The AE Wingman Collection. Get some swag for your spouse, partner, BFF, caregiver, or advocate that is sure to bring a smile and remind them of how proud you are of their fighting spirit and dedication to helping you on your AE journey.|
Any AE Warrior knows that we are NOTHING without our #AEWingman’s support and guidance. Our Wingman is the person who has been right by our side encouraging us every inch of our AE journey.
The moniker “AE Wingman” should invoke a sense of pride and reaffirmation of the courage and determination it has taken to advocate so long and hard to help us regain health.
Don’t forget to #GiveAtCheckOut if you purchase your gift through PayPal! (See: Shop and Support IAES Through PayPal’s #GiveAtCheckOut program below).
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.
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.
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.