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THE HERD AE Awareness Month 2024

theherd - THE HERD AE Awareness Month 2024

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

 February 2024, 1st edition

AE Awareness Month is Sponsored by:

In this Issue~

 

  • *Announcements:  IGNITE study, AE Awareness Month Merchandise
  • *Awareness Video 2024:  We Won’t Stop Dreaming
  • *Virtual Art Show: Now Open for Touring
  • *AE Awareness Month Speakers Series:  Treatments in Autoimmune Encephalitis Recording Available for Viewing. Pediatric Autoimmune Encephalitis Recording Available for Viewing. Five  Experts Present on Key Topics of Interest Throughout February. Free and Open to the Public. Register to Ensure a Seat.
  • *AE Infographic: In English, German, French & Spanish
  • *Royal Registry Certificates
  • *Survival Kits
  • *ABI Rehabilitation From AE: IAES Zebra Logo Maze
  • *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: Cielo clinical trial to compare Satralizumab with placebo in anti-NMDAr and LGI1 patients, 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

Annoucements

 

IGNITE STUDY

Dr. Emmanuel Mignot’s Lab at Stanford is conducting an exciting study working on unraveling the genetic associations of anti-NMDA encephalitis to advance patient care even more.

The research team has made significant strides in understanding autoimmune encephalitis, particularly anti-NMDAR encephalitis.
This research group is the pioneer in exploring their genetic results in the USA with thousands of patients worldwide.
 
Unfortunately,  they are currently facing challenges in recruiting the expected number of patients in the U.S.A., and need your help!
The research team has had a low response from anti-NMDAr patients and needs their participation to meet their goals.
This is your chance to create positive change for future AE patients.
 
Participation for USA patients is uncomplicated and comes at no cost. Participants are only required to provide their clinical history and a simple saliva sample, which is conveniently collected at home using the kit they provide.

 

Caregivers can assist their loved ones if needed. This is a golden opportunity for all of us to make the future a brighter one for the worldwide AE community. 

Brain On Fire AE Awareness Month Merchandise

#BrainOnFire is the theme for Autoimmune Encephalitis Awareness Month, February 2024. The Brain on Fire design names many of the most common symptoms experienced in Autoimmune Encephalitis and where in the brain that symptom is controlled.

T-shirts have a 2-sided design and may be ordered in a variety of styles including hoodies and long sleeve Tees. This design also comes with the IAES trademarked phrase, “AE Warrior”.  The design on 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.

Spread awareness for Autoimmune Encephalitis. These products 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, and research that may one day lead to a cure.

Virtual Art Show

Awareness Video 2024

We Won’t Stop Dreaming

This is IAES’ 8th annual awareness video celebrating AE Awareness Month. We Won’t Stop Dreaming is a touchingly emotional inside look into the challenges patients with Autoimmune Encephalitis face.

This video features AE patients and illustrates their wide age range and diversity, and the resilience they display in overcoming the immense challenges they face.

Autoimmune Encephalitis is explained in simple terms. It alerts the medical community to key RED FLAG warnings medical professionals should know.  

Sharing this video on your social media platforms has proven to have a profound impact in raising AE awareness among the medical community and public, leading to many patients receiving an accurate diagnosis in past years. #BrainOnFire #AEawareMonth #AEwarrior #BeAEaware #AutoimmuneEncephalitis are all hashtags we encourage you to use throughout the month. 

AE Awareness Month

Speakers Series 2024

Dr. Gombolay’s Presentation: Treatment in Autoimmune Encephalitis

This webinar begins with an overview of Autoimmune Encephalitis. The treatments in Autoimmune Encephalitis were described in detail. What each treatment does, why AE is treated with a combination of treatments, and how a clinician knows when to escalate treatment.  Best outcomes and the slow pace of long-term recovery.

Subscribe to the IAES YouTube channel and click the notification bell to receive alerts when a new recording in this series is published.

This is an engaging presentation with helpful visuals throughout that allow both clinician and family member, or patient to follow along and take in information about a complex disease with ease.

Dr. Khoshnood reviews the prevalence of AE, neuropsychiatric symptoms, speech issues, seizures (60% of patients), movement disorders, and autonomic dysfunction that may be seen in the patient history and presentation with autoimmune encephalitis patients. Clinicians are advised to have a high suspicion of possible AE when specific findings are present as outlined in the requirements of possible autoimmune encephalitis in the 2016 Graus, Dalmau et al paper, a Clinical Approach to Diagnosis of Autoimmune Encephalitis. Dr. Khoshnood uses several case studies and their unique presentation to illustrate the need for a wide investigation to rule out the possibility of the culprit being AE.

Dr. Mellad Khoshnood is a Clinical Assistant Professor of Neurology (Clinician-Educator), and Child Neurologist at the University of Southern California with expertise in Down syndrome, Neuro-immunology, Autoimmune Encephalitis, and Multiple Sclerosis.

All webinars will be recorded and published on our YouTube channel within 24 hours of the presentation’s completion. Subscribe to the IAES YouTube channel and click the notification bell so you will receive alerts when a new recording is published.

Dr. Dalmau is a neurologist specializing in Neuro-oncology, paraneoplastic syndromes, and autoimmune encephalitis. He discovered the first type of Autoimmune Encephalitis, anti-NMDAr, which was documented in a 2007 case study. Thus, identifying a new disease. Dr. Dalmau has discovered 10 autoimmune diseases, known as autoimmune encephalopathies.

Dr. Dalmau  has discovered 10 autoimmune diseases, known as autoimmune encephalopathies, measured by anti-protein antibodies and cerebral receptors, including anti-NMDA receptor encephalitis. Dr. Dalmau spent a large part of his professional career in the United States where he worked for over 25 years. The projects he has led include research into paraneoplastic syndromes, autoimmune encephalitis, and brain tumors, which he started at the Memorial Sloan Kettering Cancer Center in New York, and has developed more recently at the University of Pennsylvania. He leads the Clinical and Experimental Autoimmune Encephalitis Neuroimmunology group of the Instituto de Investigación Biomédica August Pi i Sunyer (IDIBAPS) at Hospital Clínic, the University of Barcelona and the Neuroimmunology Unit of SJD Barcelona Children’s Hospital. He is an ICREA Investigator (Barcelona), an Associate Lecturer in Medicine at the University of Barcelona, and a Professor of Neurology at the University of Pennsylvania. Since 2017, he has been chair of the Autoimmune Neurology Department of the American Academy of Neurology (AAN), and editor of the same Academy’s scientific journal, Neurology, Neuroimmunology and Neuroinflammation. also a member of several scientific societies, including the American Academy of Medicine, the American Academy of Neurology (AAN), the American Neurological Association (ANA), the Spanish Society of Neurology (SEN), the Catalan Society of Neurology (SCN), the French Society of Neurology (SFN), the European School of Neuroimmunology (ESNI) and the International Society of Neuroimmunology (ISNI).

All webinars will be recorded and published on our YouTube channel within 24 hours of the presentation’s completion. Subscribe to the IAES YouTube channel and click the notification bell so you will receive alerts when a new recording is published.

Sergio Muñiz-Castrillo, MD Ph.D. shares the latest developments on Prognostic Indicators for Functional & Cognitive Outcomes, with the IAES community.

Dr. Muñiz-Castrillo, is a Stanford University Scholar. He is a specialist in autoimmune encephalitis and paraneoplastic neurological syndromes. He received his doctorate from Universidad de Oviedo in Spain in 2009, studied neurology at Hospital Clínico San Carlos in Madrid, Spain in 2014, and earned his PhD in neuroscience at the Université Claude Bernard Lyon 1 in France in 2021. Most of Dr. Muñiz-Castrillo’s research has been focused on the association between autoimmune encephalitis and human leukocyte antigen (HLA), particularly defining different patterns according to phenotypic and immunological features. He am interested in further investigating the immunogenetic characteristics of these disorders, from genetic predisposition to the immunological pathways leading to the immune tolerance breakdown.

All webinars will be recorded and published on our YouTube channel within 24 hours of the presentation’s completion. Subscribe to the IAES YouTube channel and click the notification bell so you will receive alerts when a new recording is published.

Hesham Abboud, MD, PhD is the Director of the Multiple Sclerosis and Neuroimmunology Program at University Hospitals and a staff neurologist at the Parkinson’s and Movement Disorders Center. He is an Assistant Professor of Neurology at Case Western Reserve University School of Medicine. Dr. Abboud is board-certified in neurology. His special interests include Multiple Sclerosis, neuromyelitis optic, autoimmune encephalitis, autoimmune movement disorders, spinal movement disorders, spasticity management, and neuromodulation. Dr. Abboud has written several peer-reviewed articles, abstracts, and book chapters focusing on neuroimmunology and movement disorders. He has presented his research at many international and national conferences. Dr. Abboud has also served as a reviewer for many prominent medical journals focusing on general neurology, neuroimmunology, and movement disorders.

All webinars will be recorded and published on our YouTube channel within 24 hours of the presentation’s completion. Subscribe to the IAES YouTube channel and click the notification bell so you will receive alerts when a new recording is published.

Autoimmune Encephalitis Infographic

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) 

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. 

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

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

IAES Zebra Logo Maze

Our IAES Zebra logo maze was created with you in mind!

Solving a maze is a complex task that makes use of a number of key cognitive skills: most notably reasoning, decision-making, spatial memory and navigation, working memory, and planning. Try our IAES Zebra logo maze.

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

 

 

#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

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

Cielo Clinical Trial to Compare Satralizumab with Placebo in anti-NMDAr and LGI1 patients

Registration is open. If you are 12 years+ with a diagnosis of anti-NMDAr AE, or 18 years+ with a diagnosis of LGI1 AE and symptoms began less than 9 months ago, you may qualify for this rare clinical trial. 10 countries currently participating. A clinical trial doctor with top expertise in AE will oversee your care.  Rescue care/standard AE care is given to placebo patients.

The trial aims to show Satralizumab is safe and effective for the treatment of Autoimmune Encephalitis and become FDA-approved. Your participation will improve the lives of all future patients. Help us reach the best outcomes for all. Ask your doctor about this trial.

TheExTINGUISH Trial

 

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

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.

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.

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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