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THE HERD October 2023 1st edition

theherd - THE HERD October 2023 1st edition

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

Supportive assistance guide for your AE Journey~

October 1st 2023 Edition

In this Issue~

  •  *Children’s Corner (for all ages): Clinical Characteristics and Short-Term Prognosis of Children With Antibody-Mediated, Halloween Code Breaker 2-pages includes key
  • *ABI Rehabilitation: Spooky Mad Libs
  • *Helpful Tips for the AE Warrior:  AE Trivia Playing Cards
  • *Most Popular Visuals: Rituxan Side Effects, The Cat in the Hat on Autoimmune Encephalitis
  • *Featured AE Article: The story of the girl who overcame encephalitis twice: ‘It’s as if I lived through it in a coma’
  • *Video: How to Make the Most Out of Your Doctor’s Appointment
  • *Clinician’s Corner: Mycophenolate mofetil reduces the risk of relapse in anti-leucine-rich glioma–inactivated protein 1 encephalitis: a prospective observational cohort study
  • *Open Access: Long-term efficacy and safety of different corticosteroid courses plus mycophenolate mofetil for autoimmune encephalitis with neuronal surface antibodies without tumor
  • *Monthly Zoom Support Groups for Patients & Caregivers: Caregiver Monthly Zoom Support Group, #AETuesdayTries for patients and caregivers  
  • *AE Studies & Clinical Trial: What is a Clinical Trial Video, Cielo Clinical Trial to Compare Satralizumab with placebo in anti-NMDAr and LGI1 patients, The IGNITE Study, The ExTINGUISH Trial 
  • *AE Trivia Cards:  The Single Most Important Educational/Rehabilitation Tool for AE 
  • *AE Warrior Store:  Shop for AE Bling and Raise Awareness. Check out our new arrivals
  • *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut

Children’s Corner

Clinical Characteristics and Short-Term Prognosis of Children With Antibody-Mediated Autoimmune Encephalitis: A Single-Center Cohort Study

Conclusions: AE is a treatable disease that can occur in children of all ages. The mortality rate is low, as most patients have a good response to immune therapy. Compared with the older children, infants and young children (≤ 3 years old) with anti-NMDAR encephalitis have a higher incidence of fever and status epilepticus, more severe condition, higher PICU admission rate, and worse prognosis. AE patients with high maximum mRS scores and PICU admissions may require second-line immunotherapy.

Halloween Code Breaker 2-pages includes key

A Witch casts a spell on these words. Use the key provided to break the code. This is a fun Halloween activity that also acts as a cognitive rehabilitation exercise to help our younger AE Warriors re-learn and re-train their brain from brain injury caused by autoimmune encephalitis. Work on your organizational skills, memory, cognitive, reasoning, decision-making, and fine motor skills.

ABI Rehabilitation From AE

Spooky Mad Libs

Get in the Halloween spirit with this spooky Mad Libs Game. You will have your friends and family laughing in no time!
Are you working on rehabilitation for AE?
Autoimmune Encephalitis patients are left with varying degrees of cognitive deficits from the acquired brain injury they have received from their AE. Re-learning and re-training your brain is an important part of your rehabilitation.
IAES offers an abundance of free cognitive exercises, art therapy, word searches, Mad Libs, and more to assist you in your cognitive rehabilitation. Visit this webpage for more fun and challenging puzzles.

Helpful Tips for Patients & Families

AE Trivia Playing Cards

Have fun learning about AE while you re-learn and re-train your brain with AE Trivia Playing cards. IAES has created this deck of cards specifically for you and your family to make your AE journey an easier one to bear. The deck answers the 52 most common questions about AE and doubles as a rehabilitation tool. Hailed by AE experts and therapists alike as ‘Brilliant’. Become empowered by increasing  your knowledge about AE so you can enhance your ability to advocate for yourself.

Most Popular Visuals

Rituxan Side Effects

The Cat in the Hat on Autoimmune Encephalitis

Featured AE Article

The story of the girl who overcame encephalitis twice: ‘It’s as if I lived through it in a coma’

A new documentary narrates the inspiring experience of Marta Huertas, aiming to bring visibility to a rare disease that affects one person in every 250,000

Marta’s body had developed a “misdirected” immune response against NMDA receptors in the brain, which are involved in functions such as learning and memory, explains Dalmau. In these cases the prognosis is even more uncertain, because the brain has already been damaged by the virus, adds Armangué.

Video

How to Make the Most out of Your Doctor’s Appointment

IAES Editor-in-Chief, Jeri Gore, has an informative discussion with Support Services Coordinator, Mari Wagner Davis, RN, ACM covering advice on how to best prepare for a doctor’s appointment.

Clinician’s Corner

Mycophenolate mofetil reduces the risk of relapse in anti-leucine-rich glioma–inactivated protein 1 encephalitis: a prospective observational cohort study

A total of 83 patients with LGI1 autoimmune encephalitis were included. Conclusion:

Although the outcome of anti-LGI1 encephalitis patients is generally favorable, relapse is common, especially in those with cognitive impairment. MMF treatment is well-tolerated and can significantly reduce the risk of relapse.

Open Access

Long-term efficacy and safety of different corticosteroid courses plus mycophenolate mofetil for autoimmune encephalitis with neuronal surface antibodies without tumor

Conclusions: The beneficial effects of oral corticosteroid treatment may not persist beyond 12 months and may even contribute to an increased incidence of adverse effects. In order to optimize the effectiveness and safety of treatment, we recommend a corticosteroid course of 3-12 months. Patients with reduced levels of consciousness may be more inclined to choose longer courses of corticosteroids for long-term treatment. Patients with an “overlapping syndrome” may require more intense immunotherapy to prevent relapse.

Monthly Zoom Support Groups For Patients and Caregivers

 

 

 

Caregiver Monthly Zoom Support Group

The next monthly meeting will take place on October 12th at 6 pm PST/9 pm EST. The IAES Caregiver Support Group takes place on the 2nd Thursday of each month. This is a ‘safe space’ where caregivers can build relationships/friendships with others who are “walking that walk”, share/vent, and receive the support and direction they so richly deserve.

AE Caregivers have a variety of unique challenges that are different from the AE Warrior’s. Often they feel alone and need to be able to share their concerns with others who are on that same journey. Sometimes hearing a chorus of ‘Me Too!’ can have great healing power of its own. Additionally, some of you may qualify for services you are unaware of that could assist or solve a challenge you (or your loved one) are having. As topics are discussed, your hostess, Mari Davis, will direct you to available solutions, services and supports.

Your Hostess, IAES Support Services Coordinator Mari Wagner Davis, has 30 years of experience as an accredited Nurse Case Manager. Mari’s professional career prior to becoming ill with Autoimmune Encephalitis was to locate and arrange for the support services needed for patients when released from the hospital to rehabilitation or home.

#AETuesdayTries

The next monthly #AETuesdayTries Zoom meet-up will take place on October 31st, and will always be the last Tuesday of each month.

“Tuesday Tries” addresses the emotional support and rehabilitation AE patients and caregivers require in recovering from autoimmune encephalitis by building your resilience. The program utilizes science-based exercises from the work of PERMA; Seligman, 2012.

IAES wants to foster your capacity in the belief that better days are ahead! “Tuesday Tries” is about practicing a strengths-based approach by “normalizing the try;” celebrating critical milestones in the recovery and care of AE patients and caregivers in order to build a more resilient network of care.

A workbook organizer, “Growing Your Resilience” has been created to accompany the #AETuesdayTries program and is located on the ‘Apps and Tools for AE Warriors’ page in the section: ‘Building Your Resilience’ on the IAES website under the ‘For Patients’ tab. A link to download the organizer is also provided within your e-mail confirmation when you register.

Join AE patients and caregivers of all ages and stages in their AE journey.  Receive insights and encouragement from others and celebrate your critical milestones in recovery and care while  building a more resilient personal AE network!

Your facilitator, Tessa McKenzie, IAES’ Chief Resilience Officer, is a life coach and studies “resilience” through her private practice, Envisage Vocation Creation and work with Johns Hopkins University’s Life Design Lab. Join Tessa and other AE patients and caregivers who are ready to “Share Your Try Tuesdays”. Tessa will provide prompts for the reframe of perceived failures as well as peer-to-peer validation of “wins” and opportunities for relationship building.

AE Studies and Clinical Trials

What Is A Clinical Trial (5-Minutes)

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 ExTINGUISH 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). 

This trial is actively recruiting. 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.

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 hospitals and clinics you visit.

Sharing the flyer on your social media platforms will assist us in getting the highest level of participation possible.

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

Shop for AE Bling and Raise Awareness

 The Brain On Fire 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.

AE Warrior Store products proclaim the bravery and fighting spirit it takes to fight AE and regain your health. Shirts, hoodies, hats, puzzles, mugs, and gift items make this your one-stop shop for patients, caregivers, and friends who have a vested interest in raising awareness for Autoimmune Encephalitis.  Designs can be transferred to any product you prefer. The proceeds of your purchase will immediately support Autoimmune Encephalitis patients, caregivers, and families who are walking this difficult journey.

IAES holds the trademark for #AEWarrior, AE Warrior, and Autoimmune Encephalitis Warrior and is the creator of these phrases. Proceeds also go to support research that may one day lead to a cure.

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.

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.

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.

On June 16th, 2022, the International Autoimmune Encephalitis Society and Tabitha Orth, IAES President, and Founder, officially became the 7,315th “point of light”. The award was founded by President George H.W. Bush in 1990.
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