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Selected Highlighted News in the field of Autoimmune Encephalitis~ March 2022 1st Edition
In this Issue~
- *Announcements: March Brain Injury Awareness Month “SEE ME” Video, LGI1 Research Survey, The ExTINGUISH Trial, #AETuesdayTries
- *Children’s Corner (for all ages): Our Fox Has Lost His Socks
- *AE Awareness Month Recording/Videos
- *ABI Rehabilitation: AE Warrior Word Search
- *Helpful Tips for the AE Warrior: 7 Facts about Child Life Specialist
- *Most Popular Visual Downloads: Heeeey Macarena, Give Yourself Permission to Not Apologize
- *Featured AE Article: Usefulness of brain FDG PET/CT imaging in pediatric patients with suspected autoimmune encephalitis from a prospective study
- *AE Trivia Cards: The single most important educational/rehabilitation tool for AE
- *AE Warrior Store: Puzzle collection
- *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles
Annoucements
“SEE ME” Brain Injury Awareness Month Video
IAES has created this impactful video, SEE ME, to spread awareness of living with brain injury caused by Autoimmune Encephalitis. Meet AE Warriors of all ages who capture your attention by their emotional plea, “I want you to SEE ME!”
The #SeeMe campaign brings attention to the challenges of living with brain injury. Join the #SeeMe campaign during March, and share whis video along with your brain injury story on your social media accounts using the hashtag #SeeMe #BrainInjuryAwareness #IAES #AutoimmuneEncephalitis.
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.
#AETuesdayTries
The next monthly #AETuesdayTries zoom meet-up will take place March 29th, 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.
Children’s Corner
Our Fox Has Lost His Socks
Author Desiree J Wolter has written a gentle children’s story based on true events. Children are letting their parents know how much they love ‘Our Fox Has Lost His Socks’. Listen to her special Story Time presentation, which introduces ‘Auto’, the Zebra puppet, as host of the event. The first part of the video ‘Daisy Ray’ reads her book, and the second part, she tells the true story of when her husband became ill with anti-NMDAr encephalitis.
Videos From AE Awareness Month
Another Day
In celebration of Autoimmune Encephalitis Awareness Month 2022, IAES’ was pleased to present our 6th annual awareness video, ‘Another Day’. Song writer/singer Sara Bazbaz wrote the song, Another Day, to honor her dear friend with the diagnosis. Another Day is sung in both English and Spanish. The beauty of its message coupled with images of AE Warriors and the written narrative combined together allows the audience to personally connect to the challenges patients and families experience throughout their AE journey.
ABI Rehabilitation From AE
AE Warrior Word Search puzzle
Word Search puzzles are a wonderful exercise to do for brain injury rehabilitation from AE. These word scearch worksheets are a great activity to help develop your problem solving and analytical skills.
Helpful Tips for Patients & Families
7 Facts About Child Life Specialists
If you have a child hospitalized with autoimmune encephalitis or have children trying to understand a parent’s hospitalization, child life services can be helpful in helping your child. They provide support through play. They can help explain procedures and can help children understand the illness of autoimmune encephalitis if a parent is hospitalized.
Most Popular Visuals
Heeey Macarena
Featured AE Article~
Usefulness of brain FDG PET/CT imaging in Pediatric Patients with Suspected Autoimmune Encephalitis from a Prospective Study
Large lobar hypometabolism was found in 61 children, of which 54 (88.5%) children were finally diagnosed with AE. The sensitivity, specificity, and accuracy of FDG PET/CT for diagnosis of AE were 93.1%, 84.4%, and 89.3%, respectively, with a positive predictive value of 88.5% and a negative predictive value of 90.5%. The most common involved with hypometabolism was the parietal lobe, followed by occipital and frontal lobes, finally the temporal lobe on PET/CT in children with AE.
Conclusion: Brain FDG PET/CT imaging has high specificity, sensitivity, and accuracy for diagnosis of AE in clinical suspected AE children.
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
Puzzles Featuring Original Art by AE Warriors
| 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
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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. MakeMeSmile is an extension for Chrome that makes sure you select International Autoimmune Encephalitis Society when you shop online. It’s free to download. And you don’t even need to sign up. |
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.
