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

Supportive assistance guide for your AE Journey~

August 2022 2nd Edition

• *Announcements:  Caregiver Monthly Zoom Support Group, #AETuesdayTries, LGI1 Research Survey, The ExTINGUISH Trial
• *Children’s Corner (for all ages): Video: A Walk through Autoimmunity, Clinical Characteristics and Short-Term Prognosis of Children With Antibody-Mediated Autoimmune Encephalitis: A Single-Center Cohort Study
• *ABI Rehabilitation: Card Recall, Positive Feelings Word Search
• *Helpful Tips for the AE Warrior:  Autoimmune Encephalitis and Related Disorders of the Nervous System
• *Most Popular Visuals: Brain Injury Survivor, A Letter From Your Brain
• *Featured AE Article: Families’ Experiences Living with Acquired Brain Injury: “Thinking Family”—A Nursing Pathway for Family-Centered Care
• *Caregiver Honorable Mention: Timothy Crossley, Private 2nd Class US Army
• *Podcast: ANA Investigates Updates in Autoimmune Encephalitis, part 1, diagnostics
• *Clinician’s Corner: Determining an infectious or autoimmune etiology in encephalitis
• *Open Access: Seizure underreporting in LGI1 and CASPR2 antibody encephalitis
•   *AE Trivia Cards:  The Single Most Important Educational/Rehabilitation Tool for AE 
• *AE Warrior Store:  Shop for Your AE Bling and Raise Awareness 
• *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles

Announcements ~

Caregiver Monthly Zoom Support Group

The next monthly meeting will take place on September 8th 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 August 30th, 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.

LGI1 Research Survey

If you live in the United States, United Kingdom, Spain or Germany, please enroll!

A Pharma company wants to understand what the journey of an Anti-LGI1 Autoimmune Encephalitis patient is like and needs your help!

The research has two parts: an online survey and a one-hour telephone interview.  It addresses both patients and/or carers and you will be financially reimbursed for your time.

This is a GOLDEN opportunity for you to assist a Pharma company interested in developing new treatments for LGI1 patients directly. It is vital that they understand our AE journey and struggle! YOUR input will drive future progress for yourself and patients who will receive this diagnosis in the future. You can be a catalyst for change!

 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). 

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.

Children’s Corner

A Walk through Autoimmunity

Appropriate for all ages, this entertaining video is the best explanation of autoimmunity we have found to date. 

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

In this study, 103 AE patients with antibody-positive were identified. All 103 patients were given first-line immunotherapy, 21 of which were also treated with the combination of the second-line immunotherapy. All surviving patients were followed up for at least 6 months. Seventy-seven patients recovered completely, 23 had sequelae of different degrees, and 3 died. Eight patients had one or more relapses during the follow-up period. 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 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

ABI Rehabilitation From AE

Card Recall

A great exercise to play with AE Trivia Cards! Select four playing cards in sequence (3 of clubs, 4 of clubs, 5 of clubs) and place in random order face up. After five seconds turn the cards face down.

Then turn the cards over in sequence (3, then 4, then 5).

As you improve increase the number of cards in the sequence, allowing one more second of view time for each card added, to a maximum of 7 cards.

Positive Feelings Word Search

Word Search puzzles are a wonderful exercise to do for brain injury rehabilitation from Autoimmune Encephalitis. Re-learn and re-train your brain by developing problem-solving, attention span, organizational and analytical skills.

Helpful Tips for Patients & Families

Book Recommendation: 

Autoimmune Encephalitis and Related Disorders of the Nervous System

Autoimmune encephalitis, diseases where the immune system attacks the brain, have become a fast-moving field of study in recent years. The authors, Drs Josep Dalmau (who collaborated with IAES on AE Trivia Playing Cards), and Francesc Graus, have played pivotal roles in the discovery of these diseases. Here, they provide a comprehensive clinical guide to the differential diagnosis of these disorders, illustrated with over 200 figures, 30 videos and numerous clinical vignettes, many from their own practice. Clinical descriptions are straightforward, emphasizing distinctive diagnostic clues for each disease. The strengths and weaknesses of diagnostic tests and clinical criteria are discussed extensively, as well as the best evidence supporting the use of available treatments. There is an up-to-date description of immunological triggers and comorbidities, and well-illustrated and clearly summarized pathogenic mechanisms and disease models.

Most Popular Visuals

 Brain Injury Survivor

A Letter From Your Brain

Featured AE Article

Families’ Experiences Living with Acquired Brain Injury: “Thinking Family”—A Nursing Pathway for Family-Centered Care

A narrative inquiry qualitative approach was utilized in this research project to capture family group stories about their experiences living with ABI. Narrative inquiry is a useful methodology for examining families affected by an ABI because of its ability to encapsulate how families make sense of their experiences living with ABI through the characteristics of meaning, relatedness, identity, and time. This is the first known study to incorporate narrative inquiry with family research and utilize the life-stage approach of Lieblich et al.

The master narrative themes were structured to replicate the chronological boundaries of the three life-stage chapters of the narrative interview process: (1) Before the ABI Event—Families: a grounding force, (2) Now Living with the ABI Event—a. losses individual and family, b. family adaptive capacities and, c. experiences with the healthcare system: hospital and home, and, (3) The Future—A patchwork future, entering the unknown.

Caregiver Honorable Mention: Timothy Crossley, Private 2nd Class US Army

Caregivers work tirelessly to support their loved one with Autoimmune Encephalitis. To the “AE Warrior”, they are our “AE Sentinel”. With devotion, courage, compassion and unconditional love they keep watch. They stand their post with skills of a juggler, mind reader, jester, and keeper of knowledge. They diligently and quietly sacrifice their own needs and desires to see to their loved one’s needs over their own. Every caregiver in the AE community (AE Sentinel) has saved their loved one’s life at least once. They are our unsung heroes. It is with great pride that we introduce you to one such sentinel.

Tim’s mother, Amy Crossley, was diagnosed with anti-NMDAr encephalitis in 2015. Her husband Shawn and ten year old son Tim became her caregivers. In the morning before school Tim would make sure his mother had taken her medications, and would assess her needs before leaving the house. He came straight home from school to take care of his mother. He learned how to handle medical emergencies and seizure care and adapted strategies to support the wide array of neuropsychiatric symptoms and neurological symptoms his mother was plagued with. Amy went into recovery in 2020, but has been left with seizures and lasting deficits.

Pictured above is Tim at age 10 with ‘Kenny’, a zebra we sent him as a personal gift for his courage and dedication, High School leading the pledge of alligence, and this week for his graduation from boot camp at Fort Jackson, South Carolina.

Timothy is now 17. As we watched Private 2nd Class Timothy Crossley grow up, we saw the boy quickly become a man who shouldered responsibility unthinkable to his peers. The phrase, ‘and a child shall lead them.’ comes to our mind and heart when we reflect on the Crossley family story. Men like Timothy are as rare as Autoimmune Encephalitis. We talk about how AE can claim many victims as it impacts family and friends as well as the patient. They also have to dig deep within themselves to find inner strength just as the AE warrior must.

Today, Timothy is standing a new post, in support and defense of the Constitution of the United States against all enemies, foreign and domestic. He took this obligation freely, without any mental reservation or purpose of evasion as he did caring for his Mom. We know, because we know Timothy, that he will faithfully discharge his duties. Moving forward, Tim has pledged an oath to take care of us all, for that we are eternally grateful! 

Podcast

ANA Investigates Updates in Autoimmune Encephalitis, part 1, diagnostics

Dr. Adeline Goss interviews Dr. Andrew McKeon on updates on diagnostics for part one of a two-part series on autoimmune encephalitis.

Clinician’s Corner

Determining an infectious or autoimmune etiology in encephalitis

Open Access

Seizure underreporting in LGI1 and CASPR2 antibody encephalitis

Out of 32 patients with LGI1 (n = 24) and CASPR2 (n = 8) encephalitis, 20 (15 LGI1, 5 CASPR2) fulfilled the inclusion criteria. Twelve patients were excluded because of ongoing seizures (n = 3) or lack of video-EEG in the follow-up (n = 9). The average age was 62.5 ± 11.04 years (mean ± SD; range = 41–82 years) at disease onset, and 13 of the 20 patients were male (Table 1). The average reported seizure-free interval at the last follow-up was 24.2 ± 20.91 months (mean ± SD) and ranged from 3 to 76 months (Figure 1). Seizures persisted for an average of 21.3 ± 22.39 months (±SD; range = 1–96 months) before seizure freedom was achieved. All patients were taking ASM at the time of video-EEG and received first-line immunosuppressive therapy. We recorded seizures in four of 20 eligible patients (20%) during 24–48 h of video-EEG, although they previously reported seizure freedom. The reported seizure-free interval (before the recorded seizure) in these patients ranged between 3 and 27 months. In two patients focal impaired awareness seizures (after 18 and 27 months of patient-reported seizure freedom) were recorded, and in two other patients focal aware seizures (after 3 and 4 months of patient-reported seizure freedom) were recorded. The two patients who had suffered focal impaired awareness seizures had not noticed their seizures. In one of these patients, the seizure was recorded out of sleep. One of the patients with focal-aware seizures did not interpret the seizure as such, and the other patient with the focal aware seizure had a habitual aura. The four patients with seizure relapse did not show other clinical signs of relapse of the autoimmune encephalitis, such as a decline in neuropsychological performance, behavior changes, new seizure semiology, or new findings in cerebral magnetic resonance imaging.

AE Trivia Playing Cards

The perfect companion  for patients, caregivers & therapists

Doctor Recommended

We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product. 

AE Warrior Store

Shop for Your AE Bling and Raise Awareness

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

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.

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.

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.