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THE HERD AE Awareness Month 2024 Update

theherd - THE HERD AE Awareness Month 2024 Update

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January 2024, 2nd edition

January 2024

AE Awareness Month Events #BrainOnFire #BeAEaware

In this Issue~

 

  • *Announcements:  anti-NMDAr Patients and Caregivers in the U.S.A., U.K., & Australia Your Help is Needed, AE Awareness Month Merchandise
  • *Virtual Art Show: How to submit your art
  • *AE Awareness Month Speakers Series:  Five webinars feature a Star-studded lineup of illustrious 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: #Hope 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: Cielo clinical trial to compare Satralizumab with placebo in anti-NMDAr and LGI1 patients, 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

Annoucements

 

anti-NMDAr Patients and Caregivers in the U.S.A., U.K., & Australia Your Help is Needed

Hello, all you wonderful anti-NMDA patients and Caregivers in the U.S.A., U.K., and Australia.

The worldwide AE community needs your help! We have been speaking with some very talented, compassionate folks who are developing an investigational treatment for anti-NMDAr. They want to get a better understanding of what your experience as a caregiver or patient has been. To move the ball forward to a better future for us all, they want to know what you need when their investigational treatment gets to the point of doing a clinical trial. They have questions only you can answer so things are designed for the highest success.

They hope to have sessions in each country for caregivers where several of you can meet at the same time but understand that one-on-one meetings may be required as your lives are crazy busy especially this time of year.

anti-NMDAr patients will be scheduled for individual virtual meetings. Participants will be offered a GBP300/USD300/AUD300 Virtual Visa International gift card as compensation.

Anyone dealing with anti-NMDAr in these countries is welcome. We appreciate your advocacy SO MUCH and we are extremely excited about this effort and so many positive things unfolding in 2024.

e-mail to inquire: laura.iliescu@iconplc.com

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

2024 is our 6th annual Virtual Art Show. Anyone can submit art and your art can take any form. The sky is the limit as to how you want to express yourself and share with others. There is no limit to how many pieces of art you can submit. 
Do you have a tattoo? (send in a picture). Do you have a hobby? Do you have a meaningful photograph? (it could be of a sunset, a place, a special memory, or one of you/your loved one fighting AE). Do you do adult coloring? Do you create cards? Draw, paint, sew? How about a poem? A letter to your brain? The sky is the limit regarding what you submit for our virtual art show.
This is a way you can reach people all over the world and raise awareness of AE in a very special way. Do you have a pet who has helped you with your AE journey? Please send in a picture and tell us why they are important to you.
Submit your contribution by sending it to art_show@autoimmune-encephalitis.org with
1. Your name and (age is optional)
2. Name of the art if it has one
3. What the art symbolizes or means to you
Deadline January 27-2024

AE Awareness Month

Speakers Series 2024

Grace Gombolay, MD will be sharing the latest developments on this important topic with the IAES community. This webinar will cover treatments and what each treatment does.. Why AE is treated with a combination of treatments. How a clinician knows when to escalate treatment. Seronegative Patients. Best outcomes and the slow pace of long-term recovery.  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. Khoshnood is a Clinical Assistant Professor of Neurology (Clinician-Educator), Pediatric Neurologist at University of Southern California. He has expertise in Down syndrome, Neuro-immunology and Multiple Sclerosis. Dr. Khoshnood graduated from the University of Louisville School of Medicine in 2017, and did his residency in Child Neurology at Children’s Hospital of Los Angeles. With an interest in rare disease processes. Dr. Khoshnood has entered into academic medicine to help train the future of pediatric neurology and help care for the most vulnerable of our population. He has authored an impressive amount of research to date.

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

#Hope

Hope 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: #Hope #BrainOnFire #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

 

 

#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.

The IGNITE Study

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

 

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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