Don’t Be Left Behind. Keep Up With THE HERD!
February 2022, 2nd edition
February 2022
AE Awareness Month Events #BelieveYouCan
In this Issue~
- *Announcements: AE Awareness Month Merchandise, LGI1 Research Survey, The ExTINGUISH Trial, #AETuesdayTries
- *Another Day AE Awareness Video 2022
- *Unconditional ~Mia an AE Warrior’s Service Dog Video
- *Virtual Art Show
- *AE Awareness Month Speakers Series: First Two presentations Now Available on Video. Meet the Presenters. All webinars are free & open to the public. Register early to ensure a seat.
- *AE Infographic: In English, German, French & Spanish
- *Royal Registry Certificates
- *Survival Kits
- *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
- *Well-Being Gratitude Journal
- *AE Trivia Cards: The single most important educational/rehabilitation tool for AE
- *AE Warrior Store: Puzzle collection
- *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles
Annoucements
#BelieveYouCan
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.
T-shirts have a 2-sided design and may be ordered in a variety of styles (see right side for options). The design on the back of the Tee has the IAES zebra logo and the wording ‘Autoimmune Encephalitis Awareness Month 02-2022’.
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.
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!
TheExTINGUISH Trial
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.
#AETuesdayTries
The next monthly #AETuesdayTries zoom meet-up will take place February 22nd and will always be the last Tuesday of each month.
“Tuesday Tries” addresses the emotional support and rehabilitation AE patients and caregivers require in recovering from autoimmune encephalitis by building your resilience. The program utilizes science-based exercises from the work of PERMA; Seligman, 2012.
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.
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.
Another Day ~AE Awareness Month Video
In celebration of Autoimmune Encephalitis Awareness Month 2022, IAES is pleased to present our 6th annual awareness video, ‘Another Day’. Song writer/singer Sara Bazbaz wrote the song, Another Day, to honor her dear friend with the diagnosis. Hoping it would act as a vehicle to raise awareness, and lead to more patients becoming accurately diagnosed early, Another Day is sung in both English and Spanish. The beauty of its message coupled with images of AE Warriors and the written narrative combine together allowing the audience to personally connect to the challenges patients and families experience throughout their AE journey.
We hope you enjoy this impactful film and share it on your social media platforms using hashtags; #AEawareMonth #BeAEaware #AnotherDay #BelieveYouCan #AutoimmuneEncephalitis #IAES.
Unconditional ~ Mia and AE Warrior’s Service Dog
The song in this video, ‘Unconditional’, is written and sung by Sara BazBaz. This emotional song tells the story of how much Mia, a Yorkie Service dog, has enhanced her owner’s life. Mia’s ‘Mom’, is a patient with a more rare form of Autoimmune Encephalitis that has a cancer association. She also has seizures that Mia will alert her to. Service dogs can play a pivotal role in the lives of the people they serve. They are specifically trained to perform work for a person with a disability which leads to the individual having a more independent life. In addition, they provide health benefits that can lead to increasing fitness, lowering stress, and improved happiness to the person they serve.
Virtual Art Show
Get ready to be astounded when you tour IAES’ 4th Annual Virtual Art Show. AE patients and caregivers from all corners of the globe express themselves through a wide array of mediums. You will find yourself pausing in reflection as this display of artful expressions emotionally transport you.
We are thankful to all the artists participating in this year’s show. Expression through art is a powerful way to raise awareness of Autoimmune Encephalitis.
AE Awareness Month
Speakers Series 2022
Pulling Through Video Now Available
Webinar video now available. On Christmas Day 2016, the Jessops were just an ordinary family, but on Boxing Day, one near-death experience swept them all into the bewildering world of hospitals and serious illness, and their lives changed forever. Pulling Through is a handbook of everything Catherine has learned on their journey. It covers many practicalities, such as explaining hospital tests and scans, jargon-busting medical terms, finance, rehabilitation and more. But it also illuminates the emotional aspect of illness and how massively it affects family and friends. There are chapters on the power of nature, music, counselling, optimism and humour, and how to look after the mental health of both patient and carer. This is a book of hope, help and reassurance on every aspect of coping with life-changing illness in the family: the good, the bad, the funny, the sad, and the useful. If you, or someone you know, has a life-changing illness, then this book and presentation is here to help.
The video for this outstanding presentation is now available. Considered to be one of the leading experts in Pediatric AE by his colleagues, Dr. Ming Lim is a Consultant Paediatric Neurologist at the Evelina London Children’s Hospital; and is a Reader in Paediatric Neurology within Faculty of Life Sciences & Medicine, King’s College London.
“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.
Cuddle up one and all and join Desiree Wolter for a special Storytime that takes you on an adventure with the Fox family.
Do you find it difficult to explain to friends, family, colleagues and teachers what it has been like having a family member come down with autoimmune encephalitis? Our Fox Has Lost His Socks captures the experience with sensitivity and heart. This is the ideal book to share with loved ones of all ages. It thoughtfully reveals the challenging journey a family takes when a family member becomes suddenly and dramatically ill. Entertaining, revealing, fun and educational, Our Fox Has Lost His Socks is destined to be the most prized addition to anyone’s library who has a family member with a serious illness.
Author, and IAES member living in Australia, Desiree Wolter has written a gentle children’s story based on true events of when her husband became ill with autoimmune encephalitis. The first part of the webinar will be a special story time. The second half of the webinar is when Desiree will discuss her family’s personal experience with AE. A percentage of proceeds from the sale of this book will go to supporting IAES’ mission.
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.
This 8 1/2 by 11 poster/flyer infographic comes in English, Spanish, French and German. Download them and post them at hospitals, Doctor’s offices, infusion centers, clinics, schools, places of worship or your work place to spread awareness.
Social media Facebook sizes in all four languages are located for your use here.
Royal IAES Registry Certificates for AE Warriors & Sentinels (Caregivers)
Bestow these IAES #AEWarrior™ Royal Registry Certificates upon your AE Warrior™ or Sentinel (Caregiver)
The Royal IAES Registry designates The AE Warrior™ and AE Sentinel (Caregiver) with a Royal Title. In recognition of their heroism under fire. The Royal IAES Registry is the highest honor that can be bestowed upon those engaged in the mighty battle of autoimmune encephalitis.
Without warning and within an instant, these unprepared citizens were thrust unto a perilous fire raging battlefield. To fight this foe, they had to dig deep into the depths of their soul and summon the inner strength required to save their life or the life of the one they loved. This herculean task is so rare, IAES bestows the warrior with a Royal Title and enters their name into the IAES Registry. The title is affirmed and sanctified by sealed decry in the second month of each year. February is designated as Autoimmune Encephalitis Awareness Month.
The AE Warrior Certificate reads:
For displaying untold courage and inner strength battling autoimmune encephalitis. Your heroism is sanctified. In witness whereof, we hereunto set and affix the seal of the Royal Iaes registry this second month of the year 2022.
The AE Sentinel (Caregiver) Certificate reads:
With devotion, courage, compassion, and unconditional love you keep watch over your AE Warrior. For standing your post with skills of the Juggler, mind reader, Jester, and seeker of knowledge, your heroism is sanctified. In witness whereof, we hereunto set and affix the seal of the Royal Iaes registry this second month of the year 2022.
Print the certificate on quality parchment paper for best results. Download upon receipt to avoid expiration time.
Survival Kits
There’s no better way to show someone you care during AE Awareness month than to give them their own AE survival kit!
Share your love and encouragement by purchasing a survival kit label. Print your label and affix it to a colorful lunch bag. (Goodies not included). Collect required contents and use tissue paper or ribbon to create a festive presentation.
IAES has created 11 different variations of these kits that are bound to bring smiles of pleasure to those who receive them. Create a kit for your AE Warrior™, AE Mom, Doctor, Psychiatrist, Nurse, Infusion day, Child, or Caregiver. These kits are available year-round.
ABI Rehabilitation From AE
#BelieveYouCan with Faith, Hope, Love and Bravery
#BelieveYouCan Adult Coloring Page
This coloring page can be used to raise awareness for autoimmune encephalitis by posting a picture of you and your finished art on your social media platforms. Additionally, it can be used as a Valentine for that special loved one in your life or caregiver you would like to show your appreciation to. Hashtags used to raise awareness this month are: #BelieveYouCan #AEawareMonth #BeAEaware #AutoimmuneEncephalitis #AEWarrior #IAES
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.
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.
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
Doctor Recommended
We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product.
AE Warrior Store
Puzzles Featuring Original Art by AE Warriors
Original art by autoimmune encephalitis patients makes these puzzles a unique gift, challenge & collectors item. Puzzles are a long-time group or individual past time. They are a highly recommended cognitive exercise for anyone with a brain injury or in recovery from illness. Puzzles assist with comprehension, organization, memory, hand-eye coordination, fine motor skills and provide goal setting, patience, and a sense of achievement.
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
#GiveATCheckOut
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| 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.
