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THE HERD AE Awareness Month 2024 Update

theherd - THE HERD AE Awareness Month 2024 Update

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

 February 2024, 2nd edition

AE Awareness Month is Sponsored by:

In this Issue~

 

  • *Announcements: Study Questionnaire: Patient, Caregiver, and Clinician input is needed, IGNITE study, Rare Disease Day Tucson, Arizona, #GiveAGiftofHope, 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, Pediatric Autoimmune Encephalitis, and Seronegatie AE Recordings 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 Warrior in the News:  Adelaide Man Loses 5 Years of Memory with “Brain on Fire”, Milkshakes for Marleigh 
  • *Brain Graphic of Symptoms Seen in Autoimmune Encephalitis
  • *ABI Rehabilitation From AE: Symptoms In AE Word Search
  • *How to Keep Your Personal Health Record Notebook
  • *Royal Registry Certificates
  • *Survival Kits
  • *Raise Sweet Awareness: AE Warrior Candy bars
  • *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

 

Study Questionnaire: Patient, Caregiver, and Clinician input is needed

IAES has been contacted by a Ph.D. student at the University of Coimbra in Portugal, who is a scientific illustrator and science communicator, conducting research as part of her doctoral project that investigates how to design information about Autoimmune Encephalitis that will help patients and their families better understand their medical condition. For that, she needs the help of Autoimmune Encephalitis patients, recovered patients, caregivers, and clinicians.

You know how difficult it is to understand AE and all aspects of that journey. This is your opportunity to see that information is created based on your needs.

This questionnaire is directed to patients, recovered patients, and caregivers who are living or have lived with a diagnosis of Autoimmune Encephalitis. We want to understand the information that patients and family members need and what is important for them to understand about AE. This needs assessment includes their views on AE-related information: what is difficult to understand; what is important within this information; and the types of information sources used to search for AE.

Additionally, there is a questionnaire directed to clinicians who have experience in diagnosing and/or following up with patients with Autoimmune Encephalitis. It aims to understand the clinicians’ point of view on patients’ (and caregivers’) needs for information about AE. Thus, this questionnaire seeks to gather clinicians’ insights on topics including the difficulties of patients and caregivers in accessing and understanding AE-related information; challenges of clinicians in communicating AE-related information; and their opinion on the AE-related topics that are more important to be communicated.

Your participation will improve your ability to understand complex issues around AE in a visually easy way. Let’s create this positive change together. 

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. 

Rare Disease Day Tucson, Arizona

For all of you living near Tucson, Arizona., don’t miss this Rare Disease Day event on March 2nd. IAES will be there with Renee Castillo manning our table. Stop by to say hello and participate in the games, information, treats, and fun offerings available.

#GiveAGiftofHope

Invest in Creating the World

You Would Like to See

  • Autoimmune Encephalitis was identified and diagnosed quickly.
  • Patients and families receive the care and support they need throughout their experience.
  • Research that will lead to a cure.

You can help IAES create the world we all want to live in by supporting the International Autoimmune Encephalitis Society with a donation. Every single person has the power to change the world. Now more than ever we are called to make a difference.

We are so grateful for IAES’ ability to save lives and improve the quality of lives for those touched by autoimmune encephalitis and the opportunity to continue to serve. We’re humbly asking for your support. 

Small donations of $10-$25 can make an impact. Making your donation repeat monthly ensures our ability to serve the community with the hope of one day finding a cure.

Your support is essential and very much appreciated.

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.

Josep Dalmau, MD, PhD IDIBAPS-Hospital Clinic, University of Barcelona, and Caixa Research Institute, Barcelona (Spain). Adjunct Professor of Neurology, University of Pennsylvania, Philadelphia, USA

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. All of us owe our lives to Dr. Dalmau. Dr. Dalmau has discovered 11 autoimmune diseases, known as autoimmune encephalopathies. 

Dr. Dalmau begins by describing the types of antibodies found in this group of diseases. Currently, there are 17 different types of identified AE. A case study of a patient who had a differential diagnosis of anti-NMDAr AE illustrates the importance of the patient’s clinical presentation not comporting with AE. Differential diagnoses and the process of arriving at a diagnosis, errors in past diagnoses, and antibody testing with an emphasis on tissue-based assays not being reliable, and the proposed steps to refine the diagnosis of AE are reviewed. How to treat antibody-negative but probable AE. What is the future direction we are taking to advance the understanding of this group of diseases? The presentation is followed by a 50-minute lively and detailed question-and-answer period.

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.

AE Warrior in the News, Australia  

Adelaide man loses five years memory with

‘Brain on fire’

Adelaide man, Michael has autoimmune encephalitis, otherwise known as ‘brain on fire’. He has lost his memory from 2019 to today.

“He’s about the only one in South Australia with it”, said Michael’s wife, Linda.

“I write a daily diary that helps”, Michael explained to Sonya & Jules in Light Square. “I don’t think I’ll regain the memories”. 

Linda contacted IAES when her husband was first diagnosed. She credits IAES for helping her through the many challenges in their AE journey and arranging for Michael to be seen urgently by an AE expert when his health spiraled downward while the couple was visiting family in Texas last Summer.  “IAES is our 24/7 lifeline.”, stated Linda.

Milkshakes for Marleigh  

IAES Member, Kate Fisher from Australia and her daughter Marleigh, started raising awareness for AE by encouraging people to donate blood.  Marleigh was 3 years old when she was diagnosed with Autoimmune Encephalitis. She was reliant on donors to give blood for the IVIG treatments she would require for years to come. However, Kate identified a problem, the public was not aware of the need for blood donations which resulted in a lack of blood and plasma for patients in need of this life-saving treatment. The two created a project called “Milkshakes for Marleigh”.

In this interview, Kate talks about the much-anticipated release of her book that shares the stories of the many people Milkshakes for Marleigh has impacted. The book, which is making its way out into the world with a ripple effect that is making waves, is spreading awareness of the need to donate blood. Ten minutes of donating blood can save three lives, reports Kate. Milkshakes for Marleigh has saved 5,000 Australian lives since it began. No matter where you are in the world, take a friend with you to your local blood donation center. Spend an hour together having a chat and a glass of juice knowing that your simple act of kindness is saving lives.

Brain Graphic of Symptoms Seen in Autoimmune Encephalitis  

Learn the symptoms of Autoimmune Encephalitis and where they are controlled in the brain.

ABI Rehabilitation From AE

Symptoms In AE Word Search

Challenge yourself with this “Symptoms in AE” word search puzzle and others that you will find as free downloads on the ‘Rehab Cognitive Exercises’ page on the IAES website under the ‘For Patients’ tab.
Word Search puzzles are a wonderful exercise to do for brain injury rehabilitation from AE. 

IAES has created several word search puzzles that feature hidden keywords that will encourage and aid in your learning and understanding of autoimmune encephalitis.

How to Keep Your Personal Health Record Notebook

Creating Your Personal Health Record (PHR) Notebook is vital for each patient. This handout details what information and records you should keep on hand to stay on top of doctor’s visits, medications, and insurance claims. Providing your own medical records may help you receive safer and quicker treatment if you change doctors, move, or end up in an emergency room. This is a “1-stop shop” notebook containing everything that family, doctors, therapists, and care team would need to know about your care. This handout is located on the IAES under the ‘For Patients’ tab>handouts and Fact sheets.

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.

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.

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.

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