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theherd - THE HERD AE Awareness Month #BrainOnFire

Don’t Be Left Behind. Keep Up With THE HERD!

February 2023, 2nd edition

February 2023

AE Awareness Month Events #BrainOnFire

In this Issue~

 

  • *Announcements:  AE Awareness Month Activities, Awareness Month Merchandise
  • *Heroes & Dreamers AE Awareness Video 2023
  • *Virtual Art Show
  • *AE Awareness Month Speakers Series:  Six webinars features a Star-studded lineup of illustrious Experts Present on Key Topics of Interest Throughout February. Free and Open to the Public. The first 3 videos are now available.
  • *AE Infographic: In English, German, French & Spanish
  • *Royal Registry Certificates
  • *Survival Kits
  • *ABI Rehabilitation From AE:  I Can Do This 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
  • *Studies/Trials: IGNITE Study, The ExTINGUISH Trial
  • *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

 

Happy AE Awareness Month 2023!

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#BrainOnFire

 

AE Awareness Month Merchandise

#BrainOnFire is the 2023 theme for Autoimmune Encephalitis Awareness Month, February 2023. 

This design was created by IAES founder, Tabitha Andrews Orth and is copyrighted by the International Autoimmune Encephalitis Society (IAES). The design names many of the most common symptoms experienced in Autoimmune Encephalitis and where in the brain that symptom is controlled. Spread awareness for Autoimmune Encephalitis.

The phrase, “Brain on Fire” references a best-selling book written by Susanah Cahalan who has given permission for IAES to use the phrase for this collection. These products may begin a conversation that could lead to saving a life.

To spread awareness during the month of February, use hashtags #BrainOnFire #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. 

Heroes & Dreamers ~AE Awareness Month Video

In celebration of Autoimmune Encephalitis Awareness Month 2023,  IAES is pleased to present our 7th annual awareness video, ‘Heroes & Dreamers’.   IAES holds the rights to the song, ‘Heroes and Dreamers’ by Pink Zebra. 

We hope you enjoy this impactful film featuring AE Warriors (patients) and insights into their journeys. Welcome to our ‘AE Family’, the family you never knew you had.  

To spread awareness throughout February, share ‘Heroes & Dreamers’ on your social media platforms using hashtags; #AEawareMonth #BeAEaware #Heroes&Dreamers #BrainOnFire #AutoimmuneEncephalitis #IAES.

Virtual Art Show

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Get ready to be astounded when you tour IAES’ 5th 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 2023

If you were not able to attend this presentation with Dr. Bruce Cree, Professor, Neurology UCSF Weill Institute for Neurosciences here is the recording. It is an outstanding presentation that begins with an overview of Autoimmune Encephalitis and then discusses treatments.
You can locate it on the IAES website under the Library Tab>IAES AE Videos and is also on the Speaker Series page. We encourage you to subscribe to our YouTube Channel and click the bell so you will receive notifications throughout the month when new videos go up.

If you were not able to attend this webinar live, here is the video. Dr. Spatola reviews the disease process from the prodromal stage to relapse/recovery and lasting deficits. The difference between intracellular and cell surface antibodies is explained and focus is given to the two most common types of AE, anti-NMDAr, and LGI1. Studies that have provided outcome expectations are reviewed along with the slow speed of recovery, relapse rates, and lasting deficits many patients experience. There is an excellent Question and Answer period at the end of the presentation. This video is also located on the IAES website under the ‘Library’ tab>IAES AE Videos.

Dr. Eoin Flanagan, Associate Professor of Neurology and Consultant in the departments of Neurology and Laboratory Medicine and Pathology at the Mayo Clinic (Rochester, MN), gives an outstanding presentation on how autoimmune encephalitis is diagnosed and red flags clinicians can look for that may indicate another culprit is at play.

Whether you are a clinician treating this group of diseases or a patient/family member, you will have a greater understanding of how an AE diagnosis is arrived at.  Patients must meet the criteria of ‘Possible Autoimmune Encephalitis’ as outlined in the gold standard paper, A Clinical Approach to Diagnosis of Autoimmune Encephalitis, as a starting point for further investigation. The focus is always to reach an accurate diagnosis, so the patient can be accurately treated and receive the best long-term outcome.

Dr. Flanagan’s clinical expertise and research are focused on the diagnosis and management of autoimmune neurological disorders with an emphasis on inflammatory autoimmune spinal cord disorders and their mimics including their MRI patterns.

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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 include 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.

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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.

Claude Steriade, MD,CM -Temtative date-AE Month-2023_ FB

Dr. Claude Steriade is a neurologist in New York, NY, and is affiliated with NYU Langone Hospitals. Dr. Steriade has a specialty in Epilepsy and has had an interest in Autoimmune Epilepsy since her residency. She has fast become considered a top expert in that arena by her peers. 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).

infogram

This 8 1/2 by 11 poster/flyer infographic comes  in English, Spanish, French and GermanDownload 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) 

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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 in 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 2023.

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 2023.

Print the certificate on quality parchment paper for best results. Download upon receipt to avoid expiration time.

Survival Kits

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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

I Can Do This

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Adult Coloring Page

Adult coloring alleviates signs of stress and depression for patients working on rehabilitation and caregivers who can benefit from an exercise in stress relief. 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

 

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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

 

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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.

The Well-Being Gratitude Journal

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IAES is pleased to provide you with this wonderful supportive tool appropriate for anyone touched by Autoimmune Encephalitis. This guided gratitude journal is a science-based practice for improving your health and happiness. The Well-Being Warrior Journal, written by Tessa McKenzie, IAES Chief Resilience Officer, and Tabitha Orth, IAES President, prompts you to reflect on what you are grateful for each day.  

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. 

Studies/Trials

The IGNITE Study

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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. 

TheExTINGUISH Trial

 

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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.

AE Trivia Playing Cards

The perfect companion  for patients, caregivers & therapists

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Doctor Recommended

Created by IAES and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE).  This deck answers 52 of the most commonly asked questions about AE and doubles as a rehabilitation tool.  Increase your knowledge and become a strong advocate quickly and easily with AE trivia cards. 

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

Have you wanted to support IAES, Autoimmune Encephalitis awareness, and the AE Warrior that you love?

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 of an opportunity to give $1 to IAES.

Simply go to your PayPal account and select “set favorite charity”, and choose International Autoimmune Encephalitis Society.  When you make a purchase and check out, an option comes up that asks if you would like to give $1 to IAES? 

Help create the positive change you envision for the AE Community by donating your change.

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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.

baC - THE HERD AE Awareness Month #BrainOnFire

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.

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mission2 - THE HERD AE Awareness Month #BrainOnFire
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.

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International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. 

 

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.

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image 23 - THE HERD AE Awareness Month #BrainOnFire

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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