AE SUPPORT AND RESOURCES
Online Support Groups
International Autoimmune Encephalitis Society Educational Support Group
Considered to be the ‘Gold Standard’ by members of the AE community, the IAES Facebook educational support group is for individuals, and their loved ones, who have a diagnosis of Antibody-mediated Autoimmune Encephalitis, Paraneoplastic Autoimmune Encephalitis, Antibody negative Autoimmune Encephalitis (Seronegative AE), or ADEM. Administrators answer questions based on what research reports, have an expert understanding of AE, and hold a variety of specialties that enable outstanding advocacy for members in all aspects of their AE journey. Members all agree to these group rules.
AE Tuesday Tries Monthly Zoom Meet-Up
IAES’ “Tuesday Tries” celebrates your critical milestones in recovery and care and helps you to build a more resilient network!
Join other AE patients and caregivers the last Tuesday of each month. Host Tessa McKenzie, Life design Educator for the Social Sciences at John Hopkins, will provide prompts for the reframe of perceived failures as well as peer-to-peer validation of “wins’ and opportunities for relationship building.
Tuesday Tries will give you the time and tools to reflect on your AE journey, identify best practices in healing, and move forward better poised to leverage your strengths! The tools below will get you started and are included in your registration.
AE Tuesday Tries Meet-up Policies and Procedures
IAES Caregiver Monthly Zoom Support Group
The IAES Caregiver Support Group takes place the 2nd Thursday of each month. (or the 2nd Friday morning for members in Australia {11 AM Brisbane time}) of each month for those in Australia. 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.
International Autoimmune Encephalitis Society
A Facebook Public Support Page for Autoimmune Encephalitis. Membership not required.
A Facebook Finnish Support Group for Autoimmune Encephalitis Administrators: Mari E. Kiuru and Satu Salonen
Anti-NMDA-Rezeptor-Enzephaliti German Support Forum
Center for Autoimmune Neurology
Philadelphia, PA 19104
215-746-8511
The Center for Autoimmune Neurology was officially formed in January 2014, but their work in this field dates back a decade. The Center is dedicated to helping patients with autoimmune and paraneoplastic disorders affecting the nervous system. These disorders often cause encephalitis (inflammation of the brain) and can affect memory, behavior, and other brain functions. In the past, most cases of encephalitis could not be explained, and treatment was inconsistent and given without any rational understanding of the disease. More recently, a large and growing family of autoimmune causes of encephalitis and other related disorders has been discovered, many of them by this group at the University of Pennsylvania. This has created a need for physicians to provide proper care to patients with these diseases. The Center for Autoimmune Neurology was established to bring together neurologists and neuroscientists to care for these patients and learn more about the underlying diseases and how to treat them.
Casanova, 143
Recepción Edificio CELLEX
08028 Barcelona
+34 93 227 54 00 ext 4802
Diagnosis, Treatment and Research on inflammatory diseases of the brain. Better diagnosis can lead to a better personal treatment. You can benefit from early diagnosis.
The Neuroimmunology Program offers medical care and performs research on inflammatory diseases of the brain. Specifically, they are dedicated to Multiple Sclerosis, Autoimmune Encephalitis, Neuromyelitis Optica (Devic disease) and paraneoplastic syndromes of the brain. To cure these diseases by developing new diagnostic methods and therapies…
In the Neuroimmunology Program, research groups work together in order to achieve these goals including physicians from the Hospital Clinic of Barcelona and researchers from the Centre of Biomedical Research August Pi i Sunyer (IDIBAPS).
The Duke Children’s Autoimmune Brain Disease (ABD) Program is dedicated to providing innovative and comprehensive care for children and adolescents with autoimmune diseases of the central nervous system. Including: Autoimmune encephalitis (NMDA receptor antibody encephalitis, voltage-gate potassium channel antibody encephalitis, GAD antibody encephalitis), Central nervous system (CNS) vasculitis, Hashimoto’s encephalopathy (steroid responsive encephalopathy), Neuromyelitis optica, Optica neuritis, Neurosarcoidosis, NeuroBehcet, Cerebral lupus
The MOG Project
Headquartered in the U.S.A.
Established in 2017, The MOG Project is devoted to raising awareness, educating doctors, patients, and caregivers, and advancing research to support those suffering from MOGAD. They are fully staffed by dedicated volunteers.
GENERATE
German Network for Research on Autoimmune Encephalitis
Encephalitis 411
Established in 2017 with the commitment of a long-term vision of research, advocacy and awareness in the U.S.A. Focuses on viral, bacterial infectious encephalitis, noninfectious inflammatory conditions causing encephalitis and post-infectious encephalitis.
Was established in Canada as a not-for profit-foundation on 26 October 2012. It exists for all patients and caregivers, at all stages of illness and recovery. “Together we will continue the battle; we will encourage those in the trenches; and we will fight for the memory of those no longer with us.” The foundation’s goals are to promote awareness, provide support, and raise funds for research committed to understanding and ending this and related diseases
The Autoimmune Encephalitis Alliance improves the lives of patients with autoimmune encephalitis by promoting collaboration in clinical and basic research. The AE Alliance strives to find a cure for autoimmune encephalitis through multi-disciplinary, collaborative research, and clinical care.
is a volunteer organisation that helps and represents Finns challenged by very rare diseases and conditions.
In a country of only 5.4 million people, with a very distinctive language, ultra rare patients are challenged not only by their disease but also with finding peer support and medical information in their native language. This is why networking, gathering and providing information, connecting people to the support they need and raising awareness comprises the core of the non-profit work at FAURD. The association also co-operates with other non-profit associations, health organisations, medical professionals and authorities in projects concerning ultra-rare diseases.
E-mail: info@ultraharvinaiset.fi
Telephone Contact Mari E. Kiuru: +358 40 5047 937
The Encephalitis Society
Headquartered in the United Kingdom
For all General Enquiries: Call +44(0)1653 692583.
For Support and Information Enquiries: Call +44(0)1653 699599
ANE International is a non profit organization focused on raising awareness of Acute Necrotizing Encephalopathy. ANE International is an initiative that began in 2016 by parents of children affected by ANE. Our goal has foremost been to support and inform all families affected by ANE regardless of age and/or nationality.
Contact: Kim Smith
Bloggers
IAES Blog The IAES Blog was established in 2016 and is the only entity that publishes personal stories of patients and caregivers who are bravely navigating their AE journey. The blog also tackels articles on an array of topics, symptoms, and syndromes that impact patients and caregivers as additional educational support and guidance. Additionally, IAES has partnered with Penn Neuro Know (see below) to bring you articles written in easy to understand language that explains aspects of the disease process and topics of high interest which enhance your understanding and help you have better communication with your doctor/medical team. PNK articles are also re-created as handouts to support learning and increase AE awareness. Subscribe
WhereAreMyPillows embodies the tenacious spirit of an #AEWarrior. After fighting years of misdiagnosed neuropsychiatric issues and eventually receiving a seronegative autoimmune encephalitis diagnosis, she joined the IAES Facebook community and has become a valuable voice in the online AE community. Her words provide an in-depth account of what it’s like to recover from AE, resonating with patients and caregivers alike.
We’re pleased to partner with her in bringing you the #WhereAreMyPillows monthly column, a mixture of original and republished pieces hosted on the IAES blog.
The Brain Damaged Baron ~ Strength in humour
Andy Nicholson hits just the right ‘notes’ as he expresses priceless ‘pebbles’ of information about living with brain injury and opens ones eyes to the world we experience that remains ‘unseen’ by the general public.
Andy’s ability to express and share what our daily lives are like, is a gift to us all and a voice we hope will rise above the din and educate ALL about the experience of living with brain injury. Do yourself a favor and spend some time with
When Pigs take Flight Blog by: Erica Snyder, an anti-NMDAr encephalitis survivor who has a talent with the written word. She takes you on her adventures and shares her story and insights about recovering from NMDAr, the most common type of autoimmune encephalitis. Join her on the journey of transforming a negative diagnosis into a positive resource for others.
