LGI1 Autoimmune Encephalitis Market Research
“Create the positive change you want to see in the world.” – Mahatma Gandhi
LGI1 patients and Caregivers can now have their voices heard!
This is a rare opportunity for LGI1 Autoimmune Encephalitis patients & caregivers from the USA, UK, Germany, or Spain. You are being asked to share your opinions as to what is the most important in a brand new drug treating LGI1 AE!
Participants will be compensated for their time.
Download the flyer and ask that it be posted at your Doctor’s office, hospital, or infusion center. Interviews will be taking place through October 2023.
CIELO Clinical Trial for anti-NMDAr & LGI1 AE
Registration is open. If you are 12 years+ with a diagnosis of anti-NMDAr AE, or 18 years+ with a diagnosis of LGI1 AE and symptoms began less than 9 months ago, you may qualify for this rare clinical trial. 10 countries currently participating. A clinical trial doctor with top expertise in AE will oversee your care. Rescue care/standard AE care is given to placebo patients.
The trial aims to show Satralizumab is safe and effective for the treatment of Autoimmune Encephalitis and become FDA-approved. Your participation will improve the lives of all future patients. Help us reach the best outcomes for all. Ask your doctor about this trial.
The IGNITE Study
Physicians and patients are encouraged to download this IGNITE Study flyer to post and distribute. Such advocacy will enhance awareness of the study and garner the largest pool of participants possible for the highest level of success. Download flyer.
We are grateful to Dr. Emmanuel Mignot and Dr. Sergio Muñiz-Castrillo of the Stanford Centre for Sleep Sciences and Medicine and their team for undertaking this important investigation.
The ExTINGUISH Trial of Inebilizumab in NMDAR Encephalitis
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 is currently recruiting and requires stronger involvement than the level thus seen. Enrollment is limited to 116 NEWLY diagnosed patients with a confirmed diagnosis of anti-NMDAR Encephalitis who are 18 years or older. Patient involvement enhances expert care and monitoring. Your participation will also save future lives. Win/Win.
AE Awareness Month February 2023 Speakers Series
A star-studded lineup of experts in the field of Autoimmune Neurology joined us throughout the month. This empowering series will help you gain a strong understanding of AE, assist you in having impoved communication with your doctor, and help you become a stronger self- advocate.
Education is Power.
Subscribe to our YouTube Channel
AE Warrior Store
Pictured: February’s Brain on Fire AE Awareness Month 02-2023 t-shirt. The design names many of the most common symptoms experienced in Autoimmune Encephalitis and where in the brain that symptom is controlled.
Join the movement and raise awareness of AE with our conversation-starting products. Our fashionable shirts are destined to help educate the public. (Hoodies and long sleeve shirts are also available), Mugs, bags, puzzles featuring are by AE patients, hats, and more.
A variety of designs are available and can be applied to hoodies, and different shirt styles. Proceeds go to support research that will someday lead to a cure and support patients, families, and caregivers
AE Tuesday Tries Monthly Zoom Meet-Up
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!
Caregiver Monthly Zoom Support Group
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.
AE Trivia Playing cards
Learning about autoimmune encephalitis has never been easier!
IAES has created the first product in the world about Autoimmune Encephalitis for patients, families, therapists, and medical professionals.
52 most common questions are answered for you right in the palm of your hand. It’s a real game-changer in providing the support needed during your difficult journey.
Created in collaboration with Dr. Josep Dalmau. All proceeds will go to support his research team’s efforts in a search for a cure.
Updates and antibody test utilization in AE
Home of the AE Warrior®
Empowering victims of Autoimmune Encephalitis and caregivers through support and education.
The International Autoimmune Encephalitis Society is a Family/Patient centered organization that assists patients from getting a diagnosis to recovery and the many challenges experienced throughout that journey.
Doctor's Information
As more antibodies in autoimmune encephalitis have been identified and with the increased knowledge about this group of diseases, Mayo Clinic has updated their antibody panel evaluations (Aug-31-2021).
Rehabilitation
Autoimmune Encephalitis Warriors, (patients) often require rehabilitation due to an acquired brain injury (ABI). The neurologist will refer the AE patient for a neuropsychological evaluation to see what areas of the brain are not functioning properly.
Living with AE
Deficits the patient experiences in cognitive domains show a slow and incomplete recovery and may slowly improve even years following the end of treatment. It is not uncommon for a patient to need several months of convalescence with intensive rehabilitation.
The IAES Facebook educational support group is for patients who have a confirmed diagnosis of antibody-mediated Autoimmune Encephalitis, Paraneoplastic AE, Antibody negative AE/seronegative or ADEM and their loved ones.
The only support group in the AE community to answer questions based on what research reports, provide advocacy, one-on-one educational support, resources for all aspects of your AE journey, guidance and emotional support with administrators in recovery who hold medical or specialized professional experience that addresses your needs.
AE Trivia Playing Cards
Recommended by top AE Experts
Testimonials
I can’t really express how much IAES President, Tabitha Orth, and IAES has done for my wife and our family. IAES has truly been a Godsend. Like others who have been faced with autoimmune encephalitis, we will never forget that period where there was so much uncertainty and fear. IAES has been paramount in wife’s recovery and return to “self”.~Mitch Gore
Thanks to IAES, I learned I could receive assistance for my home property taxes due to my disability from Autoimmune Encephalitis. The information is one of the FAQs on their website. I was able to save a lot of money this year! I truly appreciate the wide range of advocacy IAES does for patients, caregivers and families.
~Stephanie Reinke Nilson
The International Autoimmune Encephalitis Society has been a great help to me and my fiance’ who is also my caregiver. The information they provide about the disease as well as treatments and doctors is extremely useful and helpful. I don’t know what we would have done without their help!
John Paciotti
I found IAES when my dear husband was diagnosed with HE secondary to AE in Oct 2017. With no knowledge of his illness, I’ve learned a lot about it from thier informative support group and website. I also learned as a care giver and patient advocate, I was not alone. Over the past 2 years there have been multiple inpatient admissions, (some stormy) treatments, and a trip to Mayo; to top it off he ended up with some major blood clots. (One was in his supraventricular (main artery by his heart)). I received a wrongful termination while on an approved paid leave of absence. In the end any employer who has wrongfully terminated you against ADA (Americans with Disability Acts) a file can be charged. I refused to let my husband die for any employer. Because of my persistence, determination and never giving up on him, he is finally in REMISSION (Something I honestly thought I would never have the honors of saying). In December 2019, if approved by the American Cardiology Physicians, his case will be published in their book. (His story how he overcame the severe blood clots when he was 2 mins away from death’s door). We will be receiving a copy as well. To all patient’s, caregiver’s, patient advocates, family and friends, Please do not GIVE UP- You’re all the real heroes. Remember: Please don’t ever give up on your love one or doubt yourself! You’re doing what’s right and in the best interest of the patient. God sees this and you’re not alone. To this wonderful informative group Thank you is not enough for all of your time, efforts, support, information, your undivided attention to each and every one of us. #thankful#grateful#blessed
Lorena Robinson
YOU are ALL so awesome!
Thank you VERY much for all that you do!
I hope that you all realize what a huge difference you are making in the lives of people running on their last once of strength.
I have seen many, many people join IAES since we did.
We thought that we were pretty much alone with this horrible disease but the compassion and the education we have found, as a direct result of your hard work, has made life a bit easier.
Thank you very, very much!
Freda Moeller
IAES was so caring and helpful in the time they spent with me. I appreciate everything they did to help me get the medical care and assistance I need. Now, I go to doctors and get my medications at no cost. I have a wonderful nurse who takes care of everything including rides to appointments if I need it. I can’t thank you enough!
Katherine Crow
I’d like to extend my thanks to International Autoimmune Encephalitis Society for the guidance and advocacy they gave me throughout this difficult year. IAES has helped me more than they will ever know. Based on what IAES has done for me, I am sure that there are countless others who would say the same thing. Their passion for helping others is obvious. I don’t know what else I could ever say but thank you. IAES is a hero to a lot of people!
Jamie Dobson
An old and dear friend has been grappling with autoimmune encephalitis for some time, but I confess I was as clueless about the disease as most of us are, I suppose. All I knew was that she was quite sick, that doctors had not known much about it until recent years, and that some of that is starting to change. Also, she passed along a new newsletter designed and published by volunteers which is spreading the word about how victims are banding together and empowering each other through support activities and education. “You are not alone,” is the message, which is healing in itself. Fear, isolation and the discouragement of an uncertain future are awful and cold companions, so finding out that there are others who know what you’re going through is a huge gift.
I also spent a couple of careers in various forms of publishing and communications, and when Diane showed me the new newsletter, I was impressed. It is well designed, full of good information, and gives the feeling that there’s real energy behind this patient-centered educational effort. I know how much time and labor goes into this sort of thing. It has a very professional feel, which is all the more remarkable in that it’s put together by volunteers. It’s easy to subscribe, and if you or someone you know is a fellow AE sufferer, you ought to add this to your resources for dealing with the condition.
Doug Stanfield
I remain so thankful for this non-profit organization. I seriously don’t know how I would have navigated all of the challenges of my daughter’s diagnosis without the experience and support shared by this organization and it’s members. This disease can be overwhelming, but I have been empowered by knowledge through their handouts and references/links to the latest research articles and podcasts. That, alongside the opportunity to connect with others who share a wealth of experience of living with AE, have made IAES invaluable to me and my family.
Christy Hasty Lewis
It is with sincere gratitude that I thank International Autoimmune Encephalitis Society for your dedication in not only advancing care and outcomes through educating the public and health care professionals but also in directly addressing the needs for the individuals you work alongside who are facing a diagnosis of AE. As I continue to work towards my professional goal of being a nurse educator and teaching our future generations of nurses, it is my hope that more nurses and providers have the tools and knowledge needed to recognize Autoimmune Encephalitis early on so that earlier diagnosis and intervention is possible. I will carry what I learned from all of you forward with me and close to my heart as a reminder of what we are fighting for.
Trystn K. Daley RN, BSN
When my 3-year-old son, Eren, was diagnosed with anti-NMDAr encephalitis in November 2017. We felt lost. I had never heard of this disease. It wasn’t until I found International Autoimmune Encephalitis Society that I no longer felt alone. I could rely on the volunteers within the organization and fellow members of their support group to help me understand what was happening and what to do. The neurologist who diagnosed my son did not schedule a follow-up appointment and felt no further treatment was needed two weeks after being discharged from the hospital.
IAES recommended getting a second opinion by an expert in AE. I Just came back from an appointment with one of the doctors on the IAES Doctor’s list. I feel so much relief! She is going to do an evaluation on our son next week, so she can see where he is and what the next steps should be. I feel like a black cloud has been removed from above me. I finally feel like there is hope for my boy. Thank you IAES! We would be lost without you!
Adriane Lugo
The IAES has been a huge resource for us! They recently walked us through an insurance appeal when our daughters insurance denied her life saving treatment! Within 48 hours I had all I needed in hand to appeal and win! This treatment was vital to our daughter’s care and the IAES has been a huge support in helping us advocate for her.
Devon Frakes
I want to say Thank you to The International Autoimmune Encephalitis Society for leading me to a win over medicaid refusing rituxan. This organization did the heavy work with letters to HHS, calls, and anything I needed to help save my life. I am truly grateful and in awe that the power of strangers can change a life. Without their oversight I would have still been a number who was not taken as seriously. This has been a GIANT win. Love,
Jady Davis
My daughter got Encephalitis just over a year ago. It has been a confusing and scary Journey. Good days and bad, happy and sad . This group helps so much and it is nice to know we are not alone. Thank you all and lets push forward.. Lets educate our selves and others. We hold hands and fight.
Tracey Anne Jeanette Rudwick
I’m so grateful to have found this support system. For anyone struggling through the world of autoimmune encephalitis, this is the place to be.
Sherri Crohan
This is a wonderful organisation which has provided much needed support after my son was diagnosed with AE.
Yvonne Mackenzie
This organization saved my sanity as well as pointing me in the direction of much needed resources. Not your ordinary gossip blog. Real science, kind people, and understanding. Thanks, Zebras, for being here!
Diane Davis
Amazing, a wealth of info and support.
Game changer in the world of unknown and illness.
Thank you
Clara Adams
We have been very blessed to have the support of this group throughout my daughter’s health issues. The support and knowledge they have/ give is immense. Tabitha has been an absolute angel to my daughter and I. They give of their time so selflessly.
Stacy Pickell Smithson
My family is so blessed to have found the International Autoimmune Encephalitis Society. Here you will find a wealth of information on every aspect of this illness, and the Facebook group is the perfect place to have all of your questions answered by the most knowledgeable admins and group members. It is because of this group that my daughter’s neurologist was able to consult with two of the top doctors worldwide. AE is a horrible disease, but those affected will find not only the most up to date information and research, but also a community of much needed support from others who are or have been affected. We must be our own advocates on this journey, and the International Autoimmune Encephalitis Society empowers its members to do so.
Sherri Crohan
This group has made dealing with this incredibly difficult and confusing disease bearable. They truly care about each of us and I personally know they will go out of their way tho help if at all possible. There are not enough thank yous for them. There combined knowledge is mind boggling.
Dana Wise Glaze
Just a note to say thanks to the dedicated advocates at IAES. They support us through dark times and keep us updated of all the newest research. Prayers to all the warriors and families that are fighting this monster.
Cody & Liz French
The best and most reliable source of up-to-date information about autoimmune encephalitis. And also the only organization genuinely connecting AE-patients around the world. Without IAES it would have been a lot harder for me to understand my disease (Hashimoto’s encephalitis/encephalopathy) and recover back to normal life. Excellent volunteering
Mari E. Kiuru
Since becoming a member of International AE Society, I have received so much information and support. They encouraged and supported our trip to Mayo clinic last year. The administrators in the Face Book support group are very involved and offer their support and guidance whenever I ask them. Their support makes a big difference in how I deal with my child’s disease. They have helped me realize that I’m not in this alone and together we can accomplish great things.
Stephanie Mulcahy Morrison
When I received a hospital bill for $47,000 that my insurance company refused to pay I turned to International Autoimmune Encephalitis Society for help. Int’l AE Society placed a complaint with the Hospital that they were in non-compliance with Federal statutes requiring that Nonprofit Hospitals not profit. As weeks passed, IAES went up the ladder and filed a complaint with the State of California Health and Human Services for noncompliance with Federal statutes. The hospital was told that if they did not comply with their nonprofit requirements, their nonprofit status could be removed and they would forfeit 100s of millions of dollars in write offs annually.
Next, International Autoimmune Encephalitis Society notified the Chief Financial Officer of the hospital that an IRS complaint would be filed requesting nonprofit status be revoked and they would be made to pay taxes now as if they were a profitable enterprise.
The very next day, International Autoimmune Encephalitis Society called me to let me know that they had received a phone call from the Chief Financial Officer for the hospital. He was very sorry! The hospital was waiving my entire hospital bill of $47,000!! Without the help I received from IAES, my family would have had to refinance our home. We are forever grateful.
Kelly McCabe
We are blessed to have found the tremendous support of the International Autoimmune Encephalitis Society. The medical, scientific, and emotional support found here is unlike anything on the internet. You are the single best, most thorough, comprehensive and supportive site on the Internet- thank you! Together, I know we will beat this dreadful disease!
Wanda Opdyke
I think you are great and do a wonderful service for people who need to navigate this difficult conglomerate of illnesses and are an excellent source for information and support and friendship.
Amy Brodo
When I discovered my insurance was rejecting my son’s $25k (!) hospital bill for rituxan, the International Autoimmune Encephalitis Society helped me sort through and make sense of a convoluted mess that was utterly confusing to me. They analyzed the EOBs and guided me on what questions to ask when I wasn’t getting adequate answers. Importantly, they identified that the wrong CPT codes were being used on our bill — something that a run-of-the-mill parent or even a more general patient advocate may not be steeped in. They guided me on my appeal letter, bolstering me with studies about medically necessity. They also helped me analyze my finances to understand what I was legally responsible for on the bill. And ultimately, I got the wonderful news that insurance was covering the bill!
Holly Rosenkranzt
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