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theherd - THE HERD September 2021 1st edition

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

Selected Highlighted News in the field of Autoimmune Encephalitis~ September 2021 1st Edition

In this Issue~

 

  • *Announcements: The Well-Being Gratitude Journal, #AETuesdayTries & Growing Your Resilience Organizer, AE Study in Australia, New Engagement Program for Patients and Caregivers
  • *Children’s Corner (for all ages): The Invisible Rain Cloud: What’s It Like to Live With A Brain Injury?
  • *ABI Rehabilitation: Executive Functioning Reasoning Worksheet Packet, Brief, Daily Meditation Enhances Attention, Memory, Mood, and Emotional Regulation in Non-experienced Meditators
  • *Useful Tips for the AE Warrior: Frequently Asked Questions
  • *Most Popular Visual Downloads: Fatigue From Brain Injury, It Is When I Find Another Soul
  • *COVID-19’s Impact on the AE Community: Impact of Immunosuppessants on COVID-19 Vaccine Response, Rheumatology Patients on Immunosuppressive Medications Qualify for Third COVID-19 Vaccine Dose
  • *Featured AE Article: Desperate to remember! Massive seizure erased teenager’s memories overnight
  •  *Clinician’s Corner: Autoimmune Encephalitis Resembling Dementia Syndromes
  • *COVID-19 Clinician’s Corner: Neurologic Manifestations of Severe Acute Respiratory Syndrome Coronavirus 2 Infection 
  • *Open Access: Extreme Delta Brush in Anti-NMDAR Encephalitis Correlates With Poor Functional Outcome and Death
  • *AE Trivia Cards: The single most important educational/rehabilitation tool for AE
  • *AE Warrior Store: See our new AE Wingman and hat collections
  • *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles

Annoucements

 

The Well-Being Gratitude Journal

 

Gratitude Journal-IAES

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. 

#AETuesdayTries

 

Our new program “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.

The next monthly #AETuesdayTries zoom meet-up will take place September 28th and will always be the last Tuesday of each month.  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 Study Seek Your Participation

Dr Mastura Monif-Victoria-Australia

AE Study Seeks Your Participation

Dr. Mastura Monif, a member of the IAES Medical Advisory board who is located in Australia, is conducting a study on Autoimmune Encephalitis and seeks patient participation.

The Monif Group 

Leads The Australian Autoimmune Encephalitis Consortium Project that consists of up to 13 health and academic centers around the country bringing national experts together to tackle the issue of Autoimmune Encephalitis facing the Australian population.

The group has formed The Australian Autoimmune Encephalitis Consortium bringing together national experts from 4 states around the country to tackle the issue of AE facing the Australian Health sector. With this study, they hope to produce the largest cohort of retrospective and prospective cases of AE in Australia with the aim of gaining a better understanding of disease trajectory as well as identifying key clinical, electroencephalogram/seizure phenotype, cellular and biochemical, radiological & cognitive biomarkers of disease onset, progression & outcome. This study brings together a collaborative & multidisciplinary team of neurologists, neuroimmunologists, epilepsy experts, neuropsychologists, neuroradiologists, psychiatrists, and neuroscientists. The findings are hoped to generate extensive data regarding AE as well as the production of clinical guidelines for early identification, diagnosis & treatment of these devastating conditions.

E-mail Dr. Monif regarding Study Participation

 

Patient Engagement Group

 

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Here’s your opportunity to let your voice be heard and advocate for a better future for AE patients and caregivers. Participation is encouraged no matter where you are in the world. 
The Monif Group in Australia is beginning a community engagement program where they hope to engage with members of the public from around the world who have a lived experience of Autoimmune Encephalitis, either as a patient or a caregiver, and form partnerships with researchers within their school.
These valuable partnerships provide them with a unique perspective on the health conditions they research, and allow patients/carers to contribute to a shared goal of improving outcomes for patients with Autoimmune Encephalitis. It is intended that the program facilitates engagement between consumers and researchers in a flexible, respectful way. This means that the process is largely guided by the consumers, including on their terms, within their available schedules and within the scope of what they are comfortable to contribute.

If anyone would like to be involved they can either email NeuroimmunologyResearch@monash.edu or you can complete an expression of interest on this form. contact Tiffany Rushen, the research coordinator for the project, if you have any questions.

Children’s Corner

 

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The Invisible Rain Cloud: What’s It Like to Live With A Traumatic Brain Injury?

 

A TBI (traumatic brain injury) or ABI (acquired brain injury from a disease or illness) is a life changing event. But brain injury is often called “The Invisible Injury” as injuries (and symptoms) will not always be obvious to an observer. And for those suffering from a brain injury it can be difficult to explain how they feel inside. While every TBI or ABI is different, and everyone will experience their injury in a unique way, “The Invisible Rain Cloud” attempts to explain some of the common symptoms and feelings an individual may face in their life after brain injury.

Here is some of the narration:

“Accepting the new me and missing the old me. It helps to talk to others who are going through ABI so you don’t feel alone. Their clouds are not invisible to me, and they can see my cloud too. We help each other to keep them high in the sky where they belong.

I have also found that picking up hobbies and activities before my injury helps me to remember that deep down inside, I am still me. I find resilience and strength in the small victories and I have learned that the simple things in life that we all take for granted are a huge part of what makes us who we are.

There is life after brain injury and I know that with time, patience, love and support the new me will be ok. “

ABI Rehabilitation From AE

 

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Executive Functioning Reasoning Worksheet Packet

 

Our friends at HappyNeuron Pro have released their #37 worksheet packet!

Reasoning is the ability to analyze and perceive any given information from different perspectives by breaking it down into manageable components and structuring the information in a logical order.  This packet is filled with unique complex skills with the focus on helping your client work on their reasoning skills. 

Here are 4 exercises that target different cognitive skills involved in reasoning.

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Brief, daily meditation enhances attention, memory, mood, and emotional regulation in non-experienced meditators

 

Meditation is an ancient mindfulness practice that stems from Buddhist and Hindu cultures, where the practitioner intentionally engages the mind by bringing an increased awareness to thought and feeling. Many different types of meditation practices exist. For example, focused attention meditation encourages concentration on a single object such as the breath, a part of the body, or an external object, while open monitoring mediation encourages a non-judgmental and non-attached monitoring of all things coming into our conscious awareness.
Meditation can decrease negative mood, anxiety, and fatigue. Enhance attention, working memory and recognition memory.

Useful Tips for Patients & Families

 

Frequently Asked Questions

 

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IAES has taken your most frequently asked questions and created a new section on our website that is dedicated to answering them in detail. Now you can learn quickly and access the information that concerns you most based on where you are in your AE journey. Simply go to the red button menu on the Home page.

Education is power and can allow you to feel in more control, ease your mind and assist you in having more productive conversations with your doctor and improve your ability to advocate for yourself or your loved one.

Most Popular Download

 

Fatigue with Brain Injury

 

Fatigue after Brain Injury_FB
Many AE warriors experience fatigue from their brain injury caused by their AE. A very simple way to help family and friends understand that challenge is through ‘The Spoon Theory’ written by Christine Miserandino.
 
You can find other helpful AE handouts and factsheets on the IAES website under the ‘For Patients’ tab on the IAES website. 

It Is When I Find Another Soul

 

It's When I find another Soul
Covid-19

COVID-19’s Impact on the AE Community

 

Impact of Immunosuppressants on Covid-19 Vaccine Response

COVID-19 vaccines remain the main hope of stopping the ongoing pandemic, and for this strategy to achieve its full potential, estimates are that at least 70% of the population need to be vaccinated. As some countries continue to be ravaged by COVID-19, others have seen significant reductions in new cases due, at least in part, to widespread vaccination of their citizens. Over 2.3 billion doses have been administered worldwide, and more than 50% of eligible individuals have received at least one vaccine dose in more than a dozen different countries.

Patients who are immunocompromised are of particular concern. Not only are they at higher risk for negative outcomes if infected with COVID-19, but they also may be less likely to experience an adequate response to vaccination.

Medication-specific considerations

Rituximab and other B-cell Depleting Medications

Published recommendations encourage at least four weeks between initiation of the vaccine series and the next rituximab dose, when possible, as well as delaying rituximab for two to four weeks following the final vaccine dose if disease severity allows. For patients currently receiving rituximab, some recommendations encourage vaccinating at least 12 weeks to six months after rituximab treatment.

Mycophenolate, Azathioprine

Rheumatology guidelines recommend holding mycophenolate for one week after each vaccine dose when possible. This is specific to use of mycophenolate for CID/RMD, as temporarily holding mycophenolate may not be recommended in transplant recipients. No specific recommendations have been issued for adjustments to azathioprine.

Cyclophosphamide

Specific data regarding concurrent use of the COVID-19 mRNA vaccine in patients treated with cyclophosphamide are not available. However, rheumatology guidelines recommend timing intravenous (IV) cyclophosphamide administration for at least one week after each vaccine dose when possible.

Corticosteroids

Corticosteroid doses equivalent to > 2 mg/kg or 20 mg/day of prednisone (for persons over 10kg) administered for ≥ 2 weeks are generally considered sufficiently immunosuppressive to warrant concern about coadministered vaccines. Corticosteroid use (particularly higher-dose) has been associated with impaired antibody response to COVID-19 vaccination in several studies of post-transplant patients as well as in patients with RMD. Most published guidelines for patients with CID/RMD do not include recommendations specific to corticosteroids, though one recommends vaccinating when the corticosteroid dose is <10 mg/day of prednisone (or equivalent) as possible.

Patients receiving rituximab, mycophenolate, and several other medications seem less likely to experience an antibody response. The extent to which antibody response findings relate to overall vaccine responsiveness and infection risk is unclear. 

Rheumatology Patients on Immunosuppressive Medications Qualify for Third COVID-19 Vaccine Dose

Get vaccinated act unvaccinated-FB post

This press release would be a reference AE doctors would use. The approval came one day after the FDA announced it would be revising the current emergency use authorizations (EUA) for the two mRNA vaccines to permit a third dosage in certain immunocompromised patients. The recommendation applies for ages 12 and older for individuals receiving the Pfizer-BioNTech vaccine and 18 and older for patients receiving the Moderna vaccine. The new EUA is specifically for the two mRNA vaccines and does not extend to recipients of the Johnson & Johnson vaccine currently.

“This will be enormously important for our immunocompromised patients, and we are thankful to the FDA and CDC for hearing our concerns, recognizing the needs of this population and moving forward,” stated ACR President Dr. David Karp. 

The additional dose of mRNA COVID-19 vaccine should be administered at least 28 days after completion of the primary mRNA COVID-19 vaccine series, and patients and providers should stick to the same brand for the third dose, if possible. No determination was made on the safety of receiving one of the mRNA vaccines if a patient initially received the Johnson & Johnson shot. All immunocompromised patients, including those who receive an additional mRNA dose should continue to follow prevention measures, including: Wearing a mask Staying 6 feet apart from those they don’t live with Avoiding crowds and poorly ventilated indoor spaces until advised otherwise by their healthcare provider Close contacts of immunocompromised people should be strongly encouraged to be vaccinated against COVID-19.

Featured Articles-FB

Featured AE Article~

 

Desperate to Remember! Massive Seizure Erased Teenager’s Memories Overnight

When Lottie Conway woke up in hospital in April 2020 she hadn’t a clue where she was, or how she got there but that wasn’t all she didn’t know because it slowly began to dawn on her that her memories had been wiped – it was then she began to feel scared, very scared.

The night before Lottie had had a huge seizure at her St. Leonards home. Her mum Kate Tym recalls the terror of having to hold an oxygen mask over Lottie’s face as the paramedic warned that Lottie could stop breathing. And of course, in April 2020 we were still in complete lock down so when the ambulance took Lotti to hospital no one could go with her, she was all on her own.

Listen to the recorded interview within the article

Clinician’s Corner

 

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Autoimmune Encephalitis Resembling Dementia Syndromes

 

Autoimmune encephalitis mimicking dementia syndromes-2021

Objective As autoimmune Encephalitis (AIE) can resemble neurodegenerative dementia syndromes, and patients do not always present as encephalitis, this study evaluates how frequently AIE mimics dementia and provides red flags for AIE in middle-aged and older patients.

Conclusions Red flags for AIE in patients with suspected dementia are: (1) rapidly progressive cognitive decline, (2) subtle seizures, and (3) abnormalities in ancillary testing atypical for neurodegeneration. Physicians should be aware that inflammatory changes are not always present in AIE, and that biomarkers often requested when dementia was suspected (including 14-3-3) can show abnormal results. Diagnosis is essential as most patients profit from immunotherapy.

woman in pain wearing mask covid

COVID-19 Clinician’s Corner

 

Neurologic Manifestations of Severe Acute Respiratory Syndrome Coronavirus 2 Infection

 

KEY POINTS

  • Coronaviruses are enveloped viruses with a positive-sense single-stranded RNA genome.
  • Although effective vaccines have been developed for COVID-19 and are being distributed, millions of people will have long-term complications from the infection, some of which will be neurologic.
  • Myalgia and fatigue are seen in about 50% of patients with COVID-19 and may persist even after recovery from the other symptoms. Headache occurs in 8% of patients.
  • Anosmia and ageusia may be heralding manifestations of COVID-19.
  • Mortality in COVID-19 is higher with advanced age and underlying comorbidities, including diabetes, cardiac and respiratory disorders, and immunosuppressed states.
  • The neurologic manifestations of COVID-19 can be broadly divided into two categories: those that occur during the acute phase of the infection (parainfectious complications) and the postviral manifestations that occur following the acute phase (post–acute phase complications).
  • Anosmia and ageusia are the most common early symptoms of COVID-19 infection. Nearly 40% to 60% of patients develop loss of smell, and, upon testing, nearly 90% have alteration of smell.
  • Encephalopathy is the most common neurologic manifestation in patients who are hospitalized with COVID-19, with nearly one-third of patients who are hospitalized developing encephalopathic symptoms ranging from alteration in consciousness to delirium and seizures.
  • Direct viral invasion of the brain in COVID-19 is rare.
  • Acute necrotizing hemorrhagic encephalopathy is a feared complication of several viruses, most notably influenza. It is thought to result from cytokine release syndrome rather than direct viral invasion of brain parenchyma, which is especially salient given the propensity of SARS-CoV-2 for causing similar cytokine storms in the lungs.
  • Acute disseminated encephalomyelitis is a rare demyelinating disease; it is often postviral and is more common in children than adults. However, in patients with COVID-19, it has been described mainly in adults.
  • Patients with COVID-19 develop a hypercoagulable syndrome causing both arterial and venous occlusions in the brain vasculature. Ischemic stroke, hemorrhagic stroke, and cerebral venous sinus thrombosis have all been reported.
  • Cerebrovascular complications of COVID-19 are likely due to altered coagulation pathways as demonstrated by observations of elevated d-dimer, increased prothrombin time and activated partial thromboplastin time, and disseminated intravascular coagulation.
  • Variants of Guillain-Barré syndrome seem to be more common when associated with preceding COVID-19 infection.
  • Myositis can occur at any time during the course of COVID-19; it can be quite extensive and associated with myalgia and muscle weakness that can persist after recovery of the other symptoms.
  • Long-haul COVID is a distinct postviral syndrome that is independent of the severity of the acute phase of the illness. This syndrome can emerge even in patients who have relatively mild symptoms during the acute phase.
  • A distinction needs to be made between patients with long-haul COVID and patients who were hospitalized, who often have a large number of lingering symptoms from respiratory disease, other organ damage, and prolonged hospitalization.
image 15 - THE HERD September 2021 1st edition

Extreme Delta Brush in Anti-NMDAR Encephalitis Correlates With Poor Functional Outcome and Death

 

Objective: To characterize EEG findings in anti-NMDAR encephalitis patients looking for the proportion of EEGs that were abnormal, presence of extreme delta brush (EDB), and to relate EEG findings to clinical outcomes (Glasgow Outcome Scale (GOS) at 6 months, need for ICU admission, and death).

Conclusions: The presence of EDB on EEG in anti-NMDAR encephalitis patients is associated with increased need for ICU admission, worse functional outcomes at 6 months, and risk of death.

AE Trivia Playing Cards

The perfect companion  for patients, caregivers & therapists

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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

 

New Arrivals ~ The AE Wingman Collection

 

New arrivals at The AE Warrior Store. We are pleased to present ~The AE Wingman Collection.  Get some  swag for your spouse, partner, BFF, caregiver, or advocate that is sure to bring a smile and remind them of how proud you are of their fighting spirit and dedication to helping you on your AE journey.

Any AE Warrior knows that we are NOTHING without our #AEWingman’s support and guidance. Our Wingman is the person who has been right by our side encouraging us every inch of our AE journey.

The moniker “AE Wingman” should invoke a sense of pride and reaffirmation of the courage and determination it has taken to advocate so long and hard to help us regain health.

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.

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Get that great deal online and support IAES at the same time!

When you shop Amazon Smiles and select IAES as the non-profit you want to support, Amazon will donate 5% of our purchases to the International Autoimmune Encephalitis Society.

This simple act of kindness, will support the work we do and advance our ability to service the community.

Smilematic, is a handy tool that will automatically redirect you to smile.amazon.com when you are shopping so you never have to worry about forgetting to type it in to ensure benefits go to IAES.

baC - THE HERD September 2021 1st edition

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.

mission2 - THE HERD September 2021 1st edition
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.

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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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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

Autoimmune Encephalitis Trivia Playing Cards

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