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theherd - THE HERD July 2021 2nd edition

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

Selected Highlighted News in the field of Autoimmune Encephalitis~ July 2021 2nd Edition

In this Issue~

 

  • *Announcements: #AETuesdayTries, AE Study in Australia seeks your participation, New AE Wingman Collection 
  • *Children’s Corner (for all ages): National Parks access Pass, The Boy, the Mole, the Fox and the Horse 
  • *ABI Rehabilitation: CanPlan – IPhone IPad app, Brain Maps Look Alike for Podcasts and Reading, Resilience themed word search puzzle
  • *Useful Tips for the AE Warrior:  Supporting People Who Need Help Paying For Genentech Medicines
  • *Most Popular Visual Downloads: Flooding – Becoming Overwhelmed After Brain Injury (video), Red flags for suspicion of autoimmune encephalitis in patients with psychosis
  • *COVID-19’s Impact on the AE Community:  Choosing Wisely for COVID-19: ten evidence-based recommendations for patients and physicians
  • *Featured Podcast: Evaluations in First Episode Psychosis
  • *Featured AE Article: On Beckett and Writing with a Brain Disease
  • *Clinician’s Corner: Decreased inflammatory cytokine production of antigen-specific CD4+ T cells in NMDA receptor encephalitis
  • *COVID-19 Clinician’s Corner: A long-term perspective on immunity to COVID
  • *Open Access: High Level of Soluble CD146 In Cerebrospinal Fluid Might be a Biomarker of Severity of Anti-N-Methyl-D-Aspartate Receptor Encephalitis
  • *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

    Our new program “Tuesday Tries” has received such praise and enthusiastic reviews from the AE community. It addresses a missing piece of the puzzle in support and rehabilitation that our members were lacking. 

    The next monthly #AETuesdayTries zoom meet-up will take place July 27th 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 Patients Residing in Australia ~ Your Participation is Needed for Study

     

    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

    Additionally, The Monif group is aiming to establish a patient engagement group for the Australian cohort where patients can have their voices heard. If you live in Australia and are interested in taking part, contact Tiffany Rushen, the research coordinator for the project, and let your voice be heard. 

     

    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.

    Children’s Corner

     

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    National Parks Access Pass

     

    Getting outside in nature is good for all of us. The National Park Service has park passes that allow entry into National parks. The Access Pass, part of the America the Beautiful – National Parks and Federal Recreational Lands Pass Series, is available free for US citizens or permanent residents with permanent disabilities. The pass may be obtained in person at a federal recreation site or through the mail using an application form. (Note: While the pass itself is free, the cost of obtaining an Access Pass through the mail is $10 for processing the application.) Read more about the Access Pass, and other passes your family may enjoy. 

    The Boy, the Mole, the Fox and the Horse Hardcover

     

    The Boy-the Mole-the fox and the horse-book

    The Boy, the Mole, the Fox and the Horse is not only a thought-provoking, discussion-worthy story, the book itself is an object of art.”- Elizabeth Egan, The New York Times

    From British illustrator, artist, and author Charlie Mackesy comes a journey for all ages that explores life’s universal lessons, featuring 100 color and black-and-white drawings.

    “What do you want to be when you grow up?” asked the mole.

    “Kind,” said the boy.

    Charlie Mackesy offers inspiration and hope in uncertain times in this beautiful book, following the tale of a curious boy, a greedy mole, a wary fox and a wise horse who find themselves together in sometimes difficult terrain, sharing their greatest fears and biggest discoveries about vulnerability, kindness, hope, friendship and love. The shared adventures and important conversations between the four friends are full of life lessons that have connected with readers of all ages.

    ‘This book saved my life’: How The Boy, The Mole, The Fox and The Horse became a publishing phenomenon. 

    ABI Rehabilitation From AE

     

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    CanPlan – IPhone IPad app

     

    Are you working on your cognitive rehabilitation from AE?

    CanPlan promotes independence and builds confidence by helping people with cognitive challenges complete tasks successfully. Virtually any activity can be broken into a sequence of easy-to-follow steps, illustrated by photos and reinforced with optional text and audio. Scheduling and reminder features ensure each task gets done on time.

    Support workers and therapists are providing CanPlan to their clients with cognitive, memory and other challenges, while families and caregivers are using the tool with loved ones who desire more independence. For any given task, a user initially goes through the activity with a support person or family member. Together, they take photos of each step in the task, adding text or audio as needed. The task is then filed under a customizable set of categories, which could include areas such as: Food Preparation, Household Chores, Shopping, Transportation, Exercise, Workplace Tasks, and so on.

    Brain Maps Look Alike For Podcasts and Reading

     

    Most Autoimmune Encephalitis patients have a difficult time reading after our brain injury from AE. Research has shown that reading and listening to audible books use the same parts of the brain. So, listening to books on tape is not a cheat, it uses the same areas of the brain equally and can be a helpful tool in rehabilitation as well as an enjoyable pastime for those of us who were avid readers prior to our illness.

    Resilience Word Search Puzzle

     

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    Word search puzzles and puzzles of all types are a wonderful exercise to do for brain injury rehabilitation from AE.  They are a great activity to help your AE warrior develop their problem-solving and analytical skills.

    IAES has created several word search puzzles that feature hidden keywords that will encourage and aid in your learning and understanding of autoimmune encephalitis and support you on your AE journey to recovery.

    Our ‘AE Tuesday Tries Resilience’ word search is the latest addition to our AE warrior collection.  We hope you feel the love, encouragement and support as you solve this puzzle and realize you are not alone on your journey and that you are resilient.

    Challenge yourself with this puzzle and others that you will find as free downloads on our website. Then look through the puzzles in the AE Warrior Store that have been created with art by fellow AE patients. You are sure to become inspired and challenged in your recovery efforts.

    Useful Tips for Patients & Families

     

    Supporting People Who Need Help Paying For Genentech Medicines

     

    save money on medical expenses-FB

    Genentech medications that treat Autoimmune Encephalitis are: Cellcept (mycophenolate mofetil)Rituxan (rituximab)Actemra (tocilizumab).

    Genentech has always focused on developing breakthrough medicines for serious illnesses. They believe every person should get the Genentech medicine they need, and offer programs to help make this happen. The Genentech Patient Foundation gives free Genentech medicine to people who don’t have insurance coverage or who have financial concerns.

     

    Most Popular Download

     

    Flooding – Becoming Overwhelmed After Brain Injury

     

    What do we mean when we talk about ‘flooding’? This video explains it. It is a common symptom people with Autoimmune Encephalitis or any disease that involves brain injury experiences. 
    You will find this video on the Patient and Caregiver Support page of our website along with other videos on topics/symptoms we all experience such as overstimulation, neuro fatigue, memory loss and more. Watching presentations such as these is a great way to learn and understand what the person with AE is going through.

    Red flags for suspicion of autoimmune encephalitis in patients with psychosis

     

    Red Flags for Suspicion of AE wPsychosis-fb
    Covid-19

    COVID-19’s Impact on the AE Community

     

    Choosing Wisely for COVID-19: ten evidence-based recommendations for patients and physicians

     

    The COVID-19 pandemic has produced devastating effects worldwide, with the causative coronavirus SARS-CoV-2 infecting over 170 million patients and causing more than 3.5 million deaths as of 1 June 2021.  As many countries continue to experience repeated waves of COVID-19, it is important to identify practical approaches that are evidence based and implementable in the real world to optimize the use of resources and improve outcomes. Although these are important all over the world, they are crucial in low- and middle-income countries, where resources are scarce.

    The Choosing Wisely initiative was begun to promote conversations between patients and physicians about avoiding unnecessary medical interventions. The mission of Choosing Wisely is to help patients and physicians choose care that is evidence based, not duplicative, free from harm, and truly necessary. In response to the widespread use of non–evidence-based practices, we initiated Choosing Wisely for COVID-19 to identify ‘best buys’ for the general public, patients and physicians.

    We provide here the ten recommendations with explanations (Table 1): the first five are directed toward the general public, whereas the remaining five are meant for physicians managing COVID-19. 

     

    Featured AE Podcast~

     

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    In the first segment, Dr. Gregg Day speaks with Dr. Josep Dalmau about NMDAR antibodies in patients with first episode psychosis and the utility of criteria for autoimmune psychosis. Interview lasts 16 minutes.

    Featured AE Article~

     

    Beckett-Emma-Smith-Stevens

    On Beckett and Writing with a Brain Disease

     

    I am very excited to share this with you all, since I’m sure a lot of people can relate to my autoimmune conditions ( I’m drastically improving with treatment). Many of you know–or will learn–what it’s like to be out of commission and starting to really emerge, staring at your life–and in my case, my writing–thinking: How the heck do I do this? Anyway, I’m so grateful to have an essay published on the author Samuel Beckett, British actor/activist Jess Thom (AKA “Tourette’s Hero”) and writing with an autoimmune brain disease. I hope that maybe this is helpful for someone! ~Emma Smith Stevens, AE Warrior

    Emma Smith-Stevens is the author of a novel, The Australian (Dzanc Books). Her other writing has appeared in BOMB Magazine, Literary Hub, Hobart, Wigleaf, Subtropics, Conjunctions, the NYT bestselling and LAMBDA award-winning anthology Not That Bad: Dispatches From Rape Culture (Ed. Roxane Gay), Against Death: 35 Essays on Living (Ed. Elee Kraljii Gardiner), and elsewhere. She holds an M.F.A. in fiction writing from the University of Florida, where she also began her teaching career. Most recently, she was on the faculty of the Bard Prison Initiative. She lives in Brooklyn, NY and is at work on a memoir.

    Clinician’s Corner

     

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    Decreased inflammatory cytokine production of antigen-specific CD4+ T cells in NMDA receptor encephalitis

     

    The present study is to our knowledge the first direct ex vivo quantitative and qualitative analysis of circulating autoreactive T cells involved in NMDA receptor encephalitis. Our data reveal the unexpected finding that NR1-reactive CD4+ TH cells are not elevated but rather reduced in patients with NMDAR-E and that these cells produce less inflammatory cytokines.

    Based on our findings, reduced NR1-specific TH cell numbers are not related to therapeutic immunosuppression.

    Our study further suggests that a similar reduction of TH cell reactivity toward the disease-defining antigen is not a universal finding in the still expanding types of autoimmune encephalitis. We unexpectedly observed a reduced number and profound disease-specific functional alterations of NR1-reactive TH cells in patients with NMDAR-E that were not related to immunotherapies, challenging the idea that increased pro-inflammatory NMDAR-reactive TH cells contribute to disease pathogenesis.

     

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    COVID-19 Clinician’s Corner

     

    A long-term perspective on Immunity to COVID

     

    Generating immunity against the SARS-CoV-2 coronavirus is of the utmost importance for bringing the COVID-19 pandemic under control, protecting vulnerable individuals from severe disease and limiting viral spread. Our immune systems protect against SARSCoV-2 either through a sophisticated reaction to infection or in response to vaccination. A key question is, how long does this immunity last?

    Wang and colleagues’ results suggest that long-term immunity might also be expected for SARS-CoV-2. The authors report a follow-up investigation of serum antibodies and memory B cells specific for SARS-CoV-2 approximately one year after infection. The individuals studied had previously been analysed by Wang and colleagues’ group after six months10, but it is only now, after a year, that the transition from an acute immune reaction to the generation of immunological memory has become evident. Wang et  al. show that, between 6 and 12 months after infection, the concentration of neutralizing antibodies remains unchanged. That the acute immune reaction extends even beyond six months is suggested by the authors’ analysis of SARS-CoV-2-specific memory B cells in the blood of the convalescent individuals over the course of the year. 

    Finally, Wang and colleagues show that immunity can be boosted even further in convalescent individuals by vaccinating them after a year. This resulted in the generation of more plasma cells, together with an increase in the level of SARS-CoV-2 antibodies that was up to 50 times greater than before vaccination. In evaluating vaccine efficacy, we should not expect the high antibody concentrations characteristic of acute immune reactions to be maintained in the memory phase.

    The good news is that the evidence thus far predicts that infection with SARS-CoV-2 induces long-term immunity in most individuals. This provides a welcome positive note as we wait for further data on memory responses to vaccination. 

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    High Level of Soluble CD146 In Cerebrospinal Fluid Might be a Biomarker of Severity of Anti-N-Methyl-D-Aspartate Receptor Encephalitis

     

     

    Disruption of the blood–brain barrier (BBB) is an important pathophysiological process of anti-N-methyl-D-aspartate receptor (anti-NMDAR) encephalitis. A recent multi-center study showed that soluble (s) CD146 is a potential biomarker for monitoring early BBB damage and central nervous system inflammation.

    Method

    Twenty-three anti-NMDAR encephalitis patients and seventeen controls with non-inflammatory neurological diseases were recruited. sCD146 and inflammatory cytokines in cerebrospinal fluid (CSF) and serum were detected by ELISA. Modified Rankin scale (mRS) scores were used to assess the neurological status of each patient. A follow-up review was completed three months after discharge.

    Conclusion

    Our data suggested that higher expression of CSF sCD146 correlated with more serious neurological damage. Therefore, levels of CSF sCD146 may represent a promising indicator for monitoring disease and optimizing clinical treatment decisions in the early stages of anti-NMDAR encephalitis.

     

     

    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. 

    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 July 2021 2nd 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.

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    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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