theherd - THE HERD May 2020~ 1st edition

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Selected Highlighted News in the field of Autoimmune

Encephalitis May 2020 1st edition

In this Issue~

 

    •  Announcements: NORD Launches Financial Assistance Program, IAES to assist PBS with documentary, Autoimmune Encephalitis Trivia Playing Cards
    • Most Popular App: Marco Polo
    • Most Popular Visual of the Month:  Pooh Corner~Symptoms in AE
    • Most Popular Video for Children: Sesame Street Town Hall for Kids – The ABC’s of Covid-19
    • Most Popular Children’s Project: Make a Covid-19 Time Capsule
    • Clinician’s Corner: Frequency and clinical significance of seronegative anti-NMDAR encephalitis, Sleep Disorder in anti-NMDAR Encephalitis 
    • Open Access: Intravenous methylprednisolone or immunoglobulin for anti-glutamic acid decarboxylase 65 antibody autoimmune encephalitis: which is better?
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Do you need some financial assistance at this difficult time?

IAES is a member of The National Organization of Rare Diseases and NORD has created a new program that will provide financial assistance to eligible patients, covering up to $1,000 annually.

It provides funds for essential expenses including, but not limited to unexpected utility expenses; cellular or internet service; emergency repairs to car, home or major appliances; and rent or mortgage payment assistance. Interested rare disease patients and families can reach out to NORD to find out if they meet eligibility requirements.

We encourage you to apply to see if you meet their qualifications. 

 

 

 

PBS_Mental illness documentaryupdate-April-1-2020

PBS is interested in speaking to adults (18+) who were initially diagnosed with mental illness, perhaps even institutionalized, before their anti-NDMA autoimmune encephalitis was discovered. From PBS’ perspective, ideal candidates will have videos or audio recordings of their journey (personal phone recordings, hospital/ diagnostic videos or other documentation of their symptoms and/or treatment) so we can visualize your story. The process will involve some back and forth via email/ phone to get to know potential subjects and their stories over the next few weeks. We’d love to hear from you. 

You can now follow us on Instagram at intl_ae_society for educational and entertaining  visual information.
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Autoimmune Encephalitis Trivia playing cards is the first product in the world designed to educate patients, therapists, caregivers, teachers, and friends about autoimmune encephalitis and act as an important patient rehabilitation tool all in one. AE experts around the world have shared their excitement about this product and how it can help patients.

Created by Tabitha Orth, IAES President and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE), AE Trivia cards answers the most common questions about AE. 

Autoimmune Encephalitis Trivia cards are a vital educational/rehabilitation tool specifically designed to support AE patients, caregivers, loved ones, therapists and teachers.  Each set includes 52 cards, 2 Jokers, an information card and an instruction booklet. Cards contain questions and answers to the most common questions patients ask about the disease covering diagnosis, symptoms, treatment, and recovery.  

AE trivia cards double as a rehabilitation tool for cognitive and memory loss challenges from brain injury. Through the repetition of playing, the user receives an outstanding educational foundation about AE that empowers them. Color coding is used to support lower baselines and children’s games.

As re-learning/re-training the brain advances from color and number matching and memory games, other suggested games outlined in the accompanying booklet can be utilized.  AE trivia addresses brain functions such as long- and short-term memory, attention level, reading, reasoning skills, and cognition. 

Family members, caregivers, and loved ones also benefit by learning about AE through the questions and answers provided on the cards.  Therapists and Teachers can incorporate the cards in their rehabilitation programs or student educational goals.

AE Trivia cards are on sale to the public at the introductory low price of $15 per deck. 

Most Popular Visual of the Month

 

 

 

 

Winnie the Pooh_symptoms of AE

Our friends at Pooh Corner point out some of the symptoms seen in autoimmune encephalitis.

Sesame Street Town Hall for Kids – The ABC’s of Covid-19

Join Dr. Sanjay Gupta and Elmo. Dr. Gupta shows Elmo how to make his own mask and answers children’s call-in questions.  Social distancing and how to wash your hands are also covered.

Most Popular Children’s Project


 

 

 

 

covid-19 time capsule

Parents here is a wonderful project to get your school-age children involved in.  Make a Covid-19 Time Capsule. We are living through history right now and this is the perfect opportunity to document the experience.

Visit our #StrongerTogether page for other inspirational projects and activities

Most Popular APP of the Month

Marco Polo – a helpful app that allows you to see and hear loved ones without the pressure of live contact

iphone_ipad_app

This is a mobile phone app for both iPhone and Android devices.

Unlike other forms of contact, Marco Polo allows you to take turns recording short videos. Once you download the app from the app store, you can add contacts you know already use the service or invite friends to join.

Click on the icon of the person you want to talk to, and then hold down the Start button to begin recording your message to them. Hit Stop when you are done. The person will respond in turn, and you can reply to their message when you are ready.

There are several other features available in this program, but Marco Polo primarily allows you to see and hear loved ones without the pressure of live contact.

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Clinician’s Corner

Frequency and clinical significance of seronegative anti-NMDAR encephalitis

Objective: To determine the frequency of anti-NMDAR encephalitis without detectable serum NMDAR antibodies (NMDAR-abs) and the potential changes in the syndrome presentation.

Conclusions: 13% of patients with anti-NMDAR encephalitis are seronegative. These patients are more likely to be male, with milder forms of the disease, and without tumors.

 

 

Sleep Disorders in anti-NMDAR Encephalitis

Objective: To describe the sleep disorders in anti-NMDA receptor encephalitis (anti-NMDARe)

Background: Patients with anti-NMDARe often have sleep problems. The severity and complexity of the accompanying neuropsychiatric symptoms, mask these sleep disorders, complicate their assessment, and explain the lack of prior studies

Conclusions: Sleep disturbances are frequent in anti-NMDARe. They show a temporal pattern (predominantly insomnia at onset; hypersomnia during recovery), associate with behavioral and cognitive changes, and can occur with confusional arousals during REM sleep.

 

 

 

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Intravenous methylprednisolone or immunoglobulin for anti-glutamic acid decarboxylase 65 antibody autoimmune encephalitis: which is better?

Patients positive for anti-glutamic acid decarboxylase 65 (GAD65) antibodies have attracted increasing attention. Their clinical manifestations are highly heterogeneous and can be comorbid with tumors. Currently, there is no consensus on the therapeutic regimen for anti-GAD65-associated neurological diseases due to the clinical complexity, rarity and sporadic distribution. We reported six anti-GAD65 autoimmune encephalitis (AE) patients who received intravenous methylprednisolone (IVMP) or immunoglobulin (IVIG) or both. Then, we evaluated the therapeutic effect of both by summarizing results in previous anti-GAD65 AE patients from 70 published references.

CONCLUSION: Except for stiff-person syndrome, we found that this kind of AE generally has a poor response to IVMP or IVIG. Larger prospective studies enrolling large numbers of patients are required to identify the optimal therapeutic strategy in the future.

 

 

 

 

 

 

Shop on line amazon Smiles FB - THE HERD May 2020~ 1st edition

During the COVID-19 pandemic, it is vitally important that you #StayHome and practice #SocialDistancing. Grocery shopping, as well as all shopping, should be done online.

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.

The need for our services has increased exponentially. This simple act of kindness, will support the work we do and advance our ability to service the community.

baC - THE HERD May 2020~ 1st 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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Your donations are greatly appreciated. Every dollar raised allows us to raise awareness and personally help Patients, Families and Caregivers through their Journey with AE so that best outcomes may 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

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