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THE HERD July 2023 2nd edition

theherd - THE HERD July 2023 2nd edition

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

Supportive assistance guide for your AE Journey~

July 2023 2nd Edition

In this Issue~

  •  *Children’s Corner (for all ages): Infectious profiles in pediatric anti-N-methyl-d-aspartate receptor encephalitis, Calm Down Tools for Older Kids
  • *ABI Rehabilitation: Cursive: Why It Should Be Taught Today & the Science Behind It
  • *Helpful Tips for the AE Warrior:  National Parks Disability Access Pass, How to read and understand a scientific paper: a guide for non-scientists
  • *Most Popular Visuals: LGI1 Autoimmune Encephalitis (AE) Infographic, LGI1 Autoimmmune Encephalitis Journey
  • *Featured AE Article: A catatonic woman awakened after 20 years. Her story may change psychiatry
  • *Video: Heroes and Dreamers 2023 Awareness Video
  • *Clinician’s Corner: Distinct cerebral 18F-FDG PET metabolic patterns in anti-N-methyl-D-aspartate receptor encephalitis patients with different trigger factors
  • *Open Access: Paraneoplastic encephalitis: clinically based approach on diagnosis and management
  • *Monthly Zoom Support Groups for Patients & Caregivers: Caregiver Monthly Zoom Support Group, #AETuesdayTries for patients and caregivers  
  • *AE Studies & Clinical Trial: 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

Infectious profiles in pediatric anti-N-methyl-d-aspartate receptor encephalitis

Highlights

In addition to HSV- 1, HSV- 2 meningoencephalitis is a likely precipitant of anti-NMDAR encephalitis.

Other Herpesviridae like EBV may predispose to NMDAR AE greater than previously appreciated, requiring further study.

Frequently detected concomitant infections with NMDAR AE like common respiratory viruses are less likely triggers of NMDAR AE.

 Conclusions

Seroconversion toward anti-NMDAR antibody production is often attributed to prior infection by an unknown agent (non-HSV) in idiopathic NMDAR AE, but we lack evidence of specific active or recent infections in most reported cases. We demonstrate that in addition to HSV-1/2 ME, active or recent EBV infection may be a parainfectious precipitant of NMDAR AE, while past EBV infection is not a likely impetus for NMDAR AE. Among the other Herpesviridae viruses, HHV-6 and HHV-7 require further study, while we detected no predisposition from VZV or CMV. Common respiratory infections are not likely contributory toward the development of NMDAR AE, including influenza, parainfluenza, RSV, rhinovirus, adenovirus, SARS-CoV-2, and hMPV. Evidence of exposures to HIV, TB, parvo B19, and Bartonella were not found in patients with NMDAR AE. Enterovirus was not detected in our NMDAR AE cohort from CSF, stool, and nasal swab. The arboviruses WNV, CEV, SLEV, EEE, WEE, and the common bacteria mycoplasma pneumoniae are not likely contributory toward the development of NMDAR AE, while Streptococcus pharyngitis is unlikely but requires further study. These data highlight the need for future large-scale studies to evaluate the role and underlying pathogenesis of Herpesviridae and other infectious agents in triggering NMDAR AE.

Calm Down Tools for Older Kids

Print this list of coping activities in a location that is easy for family and caregivers to refer to when your AE Warrior is feeling overwhelmed with too much stimulation. These activities can help older children to balance their sensory issues, provide relief when taking a well-needed break from cognitive activities and provide calm activities to assist your loved one in feeling comfortable with the demands they receive in the day. 

Other helpful exercises for children are found on the Children’s Corner webpage under the ‘For Patients’ tab on the IAES website. 

ABI Rehabilitation From AE

Cursive: Why It Should Be Taught Today & the Science Behind It

 Writing in cursive helps to build neural pathways necessary to stimulate brain activity that enables vision-motor control and language fluency necessary for cognitive development, learning, reading, sports, socialization, and everyday tasks. 

Helpful Tips for Patients & Families

National Parks Disability Access Pass

Did you know that you can get a National Parks Disability Access Pass? This pass allows free access to National Parks for disabled individuals and their family members, (those in 1 car), to National Parks, and a discount on camping. They are available at National Parks. Go to the National Park Service website for needed information.

How to read and understand a scientific paper: a guide for non-scientists

Journal articles, a primary way science is communicated in academia, are a different format to newspaper articles or blogs and require a level of skill and undoubtedly a greater amount of patience. Here, author Jennier Raff, has prepared a helpful guide for non-scientists on how to read a scientific paper. These steps and tips will be useful to anyone interested in the presentation of scientific findings and raise important points for scientists to consider with their own writing practice.

Most Popular Visuals

LGI1 Autoimmune Encephalitis (AE) Infographic

This information on the infographic summarizes insights from primary research conducted in 2022, commissioned by UCB and supported by patient organizations, to understand the journeys and needs of people in the LGI1 AE patient community. In total, 13 LGI1 patients and 10 caregivers, from the US and UK, contributed to this research through surveys and qualitative research interviews. Researchers also surveyed and interviewed 32 Neurologists. Researchers collaborated with three patient organizations to develop this output – Detailed data from the study and organization collaboration are not published. Special thanks to the people living with LGI1 AE who contributed to this research and output development.

Partnering patient organizations: International Autoimmune Encephalitis Society (autoimmune-encephalitis.org) Encephalitis Society (www.encephalitis.info) Autoimmune Encephalitis Alliance (aealliance.org).

LGI1 Autoimmune Encephalitis Journey

Featured AE Article

A catatonic woman awakened after 20 years. Her story may change psychiatry

New research suggests that a subset of patients with psychiatric conditions such as schizophrenia may actually have an autoimmune disease that attacks the brain. 

The young woman was catatonic, stuck at the nurses’ station — unmoving, unblinking and unknowing of where or who she was.

Her name was April Burrell.

Before she became a patient, April had been an outgoing, straight-A student majoring in accounting at the University of Maryland Eastern Shore. But after a traumatic event when she was 21, April suddenly developed psychosis and became lost in a constant state of visual and auditory hallucinations. The former high school valedictorian could no longer communicate, bathe or take care of herself. She remained in this state for two decades. Immunotherapy brought her back!

Video

Heroes and Dreamers 2023 Awareness Video

In case you missed it last February, this is the 7th annual AE awareness video IAES has produced featuring AE Warriors (patients) and insights into their journeys. Welcome to our ‘AE Family’, the family you never knew you had.

Autoimmune Encephalitis is a group of inflammatory brain diseases that are characterized by prominent neuropsychiatric symptoms. These patients are often believed to have psychiatric presentations, but they do NOT. Common clinical features include a change in behavior, psychosis, seizures, memory and cognitive deficits, abnormal movements, dysautonomia, and a decreased level of consciousness. Psychiatrists and Emergency Room Physicians are often the first medical professionals who see these patients. It is vital that Clinicians consider the possibility of an autoantibody-related etiology and become familiar with the red flags suggestive of synaptic autoimmunity as the underlying cause in all cases of first-onset, out-of-the-blue psychosis. A high level of suspicion is necessary as autoimmune encephalitis is treatable with immunotherapy. Firm evidence shows that earlier recognition and treatment lead to improved outcomes. It is important to note, that the disorder is refractory to antipsychotics; indeed, antipsychotic agents make affected patients much worse, even to the point of developing something akin to neuroleptic malignant syndrome.

We hope you share this video and help us with our continued efforts in raising awareness for this highly treatable group of diseases. 

Clinician’s Corner

Distinct cerebral 18F-FDG PET metabolic patterns in anti-N-methyl-D-aspartate receptor encephalitis patients with different trigger factors

Study results highlighted the marked asymmetry of cortical hypermetabolism in cryptogenic patients compared with a relatively symmetric pattern which was found in the latter group. Interestingly, in line with such PET findings, we also noted that most of our cryptogenic patients presented with unilateral abnormalities in clinical symptoms or EEG, namely, focal dystonia and seizures or unilateral slow wave and epileptiform activity, supporting the patients with regional brain abnormalities. By contrast, patients in the paraneoplastic group often showed symmetry symptoms and EEG results, which further indicated highly correlation of PET characteristics with other clinical measures.

Our study illustrated that patients with anti-NMDAR encephalitis triggered by virus encephalitis had a specific metabolic pattern. We noted that areas of regional hypometabolism in the unilateral temporal lobe have correlates on MRI, suggesting the possibility of impaired neuronal activities as a result of acute necrosis in neurons caused by viral encephalitis; on the other hand, the hypermetabolism in the contralateral temporal regions is more likely to be generated with attacks by autoantibodies in the second phase of the illness pattern. In addition, Novy et  al.12 emphasized involvements of subcortical structures in antiNMDAR encephalitis, proposing that enhanced activities in the basal ganglia were mediated by the autoantibodies and lead to the occurrence of movement symptoms. In this context, it was plausible that the hypermetabolism of the basal ganglia in our patients of all three subgroups may reflect this aspect.

Conclusion This study gave detailed descriptions of distinct brain metabolic patterns related to patients with anti-NMDAR encephalitis triggered by different causes. These metabolic patterns with 18F-FDG PET

Open Access

Paraneoplastic encephalitis: clinically based approach on diagnosis and management

Main messages

  • The updated criteria for paraneoplastic neurological syndromes help to standardize the clinical approach toward diagnosis.
  • Specific knowledge of the caveats of commercial antibody testing methods is required to avoid under/over-diagnosis of these syndromes.
  • Early tumor detection, removal, and concomitant immunomodulation are necessary to ensure better outcomes.

    Monthly Zoom Support Groups For Patients and Caregivers

    Caregiver Monthly Zoom Support Group

    The next monthly meeting will take place on August 10th 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 July 25th, 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 

    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

    Check out the two new t-shirt designs at the Autoimmune Encephalitis Warrior Store, the “Don’t Quit/Do IT #AEWarrior” and the colorful retro #AEWarrior design.  

    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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