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THE HERD November 2023 2nd edition

theherd - THE HERD November 2023 2nd edition

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

Supportive assistance guide for your AE Journey~

November 2nd 2023 Edition

In this Issue~

  •  *Children’s Corner (for all ages): Turkey by Numbers Coloring
  • *ABI Rehabilitation: Roll a Thanksgiving Story Game
  • *Helpful Tips for the AE Warrior:  Personal Health Record Notebook
  • *Most Popular Visuals: A Thanksgiving Turkey’s Musings to the AE Warrior, Caregiver Character Archetypes
  • *Featured AE Article: Mum gives birth in a coma after she started speaking with an American accent
  • *Podcast: Autoimmune Encephalitis Series: Advancing the Science
  • *Clinician’s Corner: Understanding Clinical Trials for Autoimmune Encephalitis Webinar
  • *Open Access: Long-term outcomes and health-related quality of life in patients with autoimmune encephalitis: An observational study
  • *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

Turkey by Numbers Coloring

Here’s a fun activity for our younger AE Warriors who are working on improving their executive functions in rehabilitation from brain injury from their AE. Executive functions are particularly important because they’re critical to how a person functions in their daily life. This color by numbers will assist your AE Warrior to improve

  • Working memory: forming and storing memories, and processing information
  • Mental flexibility: planning, multitasking, and problem-solving
  • Self-control: controlling impulses and voluntary movement

This art project along with others is located on the ‘Children’s Corner’ webpage under the ‘For Patients’ tab on the IAES website. 

ABI Rehabilitation From AE

Roll a Thanksgiving Story Game

Here’s a game to get you in the holiday spirit of gratitude and thanks. This game works on cognitive rehabilitation from brain injury due to AE. Roll the dice 4 times. Every time you roll, a different element of your story is revealed. Once you have finished rolling the dice, write or tell your story. Work on your: organizational skills, memory, cognitive, reasoning, and decision-making skills.

Helpful Tips for Patients & Families

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.

Most Popular Visuals

A Thanksgiving Turkey’s Musings to the AE Warrior

Autoimmune Encephalitis Halloween

Featured AE Article

Mum gives birth in coma after she started speaking with American accent

A seemingly healthy mother who suddenly started speaking with an American accent was forced to give birth while in a coma, weeks after she was diagnosed with a rare condition dubbed “brain on fire”. It completely changed her personality and meant she was unconscious for the first month of her baby daughter’s life.

Podcast

Autoimmune Encephalitis Series: Advancing the Science

In the first episode of a four-part series on autoimmune encephalitis, Dr. Justin Abbatemarco, a member of IAES’ Medical Advisory Board, talks with Dr. Josep Dalmau about relevant updates on autoimmune encephalitis, ongoing/upcoming clinical trials, and so much more.

Clinician’s Corner

Understanding Clinical Trials for Autoimmune Encephalitis

IAES will be hosting a webinar on Clinical Trials that is free and open to the public on November 16th. We went to the best AE expert on the topic, Dr. Jeffrey Gelfand, who enthusiastically accepted our invitation.

Everyone here has a stake in this. If we are to find a cure for AE as an end goal, we MUST have better treatments that are FDA-approved for Autoimmune Encephalitis (approved treatments worldwide) so patients are never denied treatment or experience treatment delays. A great deal of advocacy and understanding of AE had to take place to reach this point. This is HUGE! There are alternative treatments other than Rituxan that can help patients who don’t respond as we hope or can be more effective. There are also 3rd line treatments with extreme promise, but we need to run Clinical Trials to get them to all AE patients for better outcomes.

All of us need to understand how clinical trials are run and share that information with any AE patient we meet. Dr. Gelfand focuses on clinical trials for AE, has been a key researcher on the topic, and has moved the ball forward for all AE patients through his contributions.

Clinical trials provide free AE treatment, experts oversee your case and the health and best outcome of the patient is not compromised if you get a placebo. AE patients get the opportunity to receive a highly promising treatment and our forever thanks for helping all patients (present and future), have better outcomes.

The webinar will be recorded. 

Open Access

Long-term outcomes and health-related quality of life in patients with autoimmune encephalitis: An observational study

As shown in Figure 2, 15 (71%) patients had global QOL within normal limits. Similarly, most of the patients had physical/mental QOL scores within normal limits (86% and 71%, respectively). By contrast, only 11 (52%) patients had social QOL within normal limits, and those of the other 10 (48%) were under normal limits. Based on the social QOL of each patient, they were divided into the “within-normal” group (n = 11) and “under-normal” group (n = 10), and a comparative analysis of the clinical manifestation revealed a higher frequency of sequelae in the “under-normal” group than in the “within-normal” group (90% vs 0%, P < .001) (Table 1). Moreover, the frequency of returning to work/school life was significantly lower in the “under-normal” group than in the “within-normal group” (40% vs 100%, P = .004), and mRS at the present was significantly worse in the “under-normal” group than in the “within-normal group” (1 vs 0, P = .004). No significant between-group differences were found in any other items (Table 1). The Neuro-QOL results in each of the 12 domains are shown in Supplementary Figure 4; Supplemental Digital Content 7, https://links.lww.com/MD/K21, and around 30% to 50% of the patients had HRQOL under normal limits in domains of depression, anxiety, affection, cognition, and social role.

Conclusions:

Five years after AE onset, all patients achieved neurologically favorable outcomes (mRS ≤ 2), but nearly half of them had any type of sequelae. No more than 71% returned to their previous work or school life, and nearly half of the patients had social QOL under normal limits. The difficulty in returning to work/school and a worse HRQOL were prominent in patients with sequelae. Therefore, early diagnosis and treatment to prevent sequelae in the acute phase of AE could potentially promote patients’ return to previous work/school life and improve their long-term HRQOL several years after onset.

Monthly Zoom Support Groups For Patients and Caregivers

 

 

 

Caregiver Monthly Zoom Support Group

The next monthly meeting will take place on December 14th 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 November 28th, 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 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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