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~
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
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.
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.
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.
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 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
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
Useful Tips for Patients & Families
Supporting People Who Need Help Paying For Genentech Medicines
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
COVID-19’s Impact on the AE Community
Choosing Wisely for COVID-19: ten evidence-based recommendations for patients and physicians
Featured AE Podcast~
Featured AE Article~
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.
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.
COVID-19 Clinician’s Corner
A long-term perspective on Immunity to COVID
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.
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.
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
We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product.
Shop & Support IAES Through PayPal’s
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.
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.
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.