Hashimoto's Encephalopathy / SREAT Alliance
HESA NEWS
FUND RAISERS
News Letter
MARCH 2025
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HASHIMOTO'S ENCEPHALOPATHY/SREAT & SERONEGATIVE AUTOIMMUNE ENCEPHALITIS
HESA's new book features a wide range of topics based on the most current research.
You will find sections on HE/SREAT, Seronegative AE, current treatments, interviews with medical professionals, deeply personal stories written by patients & caregivers, information about disability and so much more!
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Past Events
February 2025
The World Encephalitis Day Alliance presents – WEDA 2025 Conference & Conversations
WEDA 2025 organized by World Encephalitis Day Alliance was a fantastic 3 day event of inspiring talks, networking, and thought-provoking discussions. The WEDA 2025 was a must-attend for anyone interested in the latest research and developments in encephalitis. Attendees connected with like-minded community members, learned from experts, and were part of the conversation that shapes the future.
October 2024
An all day event that focused on pediatric and adult
autoimmune encephalitis (AE) with physicians, caregivers, and the survivors impacted.
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Speakers:
Hesham Abboud, MD, PhD
Alise K Carison, MD, MS
Eoin Flanagan, MD, B, CH
Ahmed Zayed Obeidat, MD, PhD
Ian Rossman, MD, PhD
Rajeet Shrestha, MD, Jill Winegardner, PhD​
2021
WORLD ENCEPHALITIS DAY ALLIANCE
CONFERENCE 2021
A virtual event for patients, caregivers and physicians to support our community, educate and promote awareness of various forms of encephalitis.
An virtual symposium for medical professionals who speak about the importance of crossing the aisle and using a necessary multidisciplinary approach among medical professionals.
ASK ME ABOUT HE CAMPAIGN 2021
with HESA and AE ALLIANCE​
HESA and AE Alliance raised awareness of autoimmune encephalitis together with our communities by posting pics with the most common ways they are affected by AE.
#AskMeAboutHE
2020
A first of its kind event for patients and caregivers with multiple encephalitis organizations working together
to bring support and education to the
encephalitis community.
SUSAN FOLEY
RECEIVES
RARE DISEASE LEADER AWARD
Global Genes connects, empowers and inspires the rare disease community. The organization’s strategy: "We spread awareness through our website, social media, Facebook support groups, published books, and encephalitis conferences and symposiums. We join forces with other AE non-profits to give us more power to help people with autoimmune encephalopathy. If we cannot help someone, we try to find another group that can."
MADDY BOEHME'S JOURNEY WITH AUTOIMMUNE
ENCEPHALITIS
with Quest Diagnostics
A discussion with Maddy Boehme and Dr. Robert Weir of UT Southwestern.
Dr. Josep Dalmau book; Autoimmune Encephalitis, and Related Disorders of the Nervous System.
Maddy Boehme summarizes a section on Hashimoto's Encephalopathy in
Dr. Dalmau's New Book.
For those who are interested, I read the chapter on HE from the recently released textbook “Autoimmune Encephalitis and Related Disorders of the Nervous System” written by Dr. Dalmau and Dr. Graus
The main takeaways from the chapter were as follows:
1. The mechanisms of Hashimoto’s Encephalopathy are still not well understood, included the role of thyroid (TPO) antibodies, thus make diagnosing HE difficult and to some controversial. This has lead to the over diagnosis of HE, which in turn has made it difficult to study the disease (many diagnosed have been incorrectly diagnosed and thus cannot be studied)
2. Hashimoto’s Encephalopathy should follow the proposed diagnostic criteria:
1. Encephalopathy manifested by cognitive impairment and one or more of the following (psychiatric symptoms, myoclonus, seizures, focal neurological deficits)
2. Presence of serum thyroid antibodies
3. Euthyroid status or mild hypothyroidism
4. No findings in neuro imaging studies indicating vascular, neoplastic, typical autoimmune, or structural lesions
5. Absence of well characterized neuronal antibodies (AE antibodies) in serum and CSF
6. Complete or near complete response to steroid treatment
7. Reasonable exclusion of alternative causes
3. A Limbic encephalitis variant of Hashimoto’s Encephalopathy has been speculated and was first described in 3 teenagers with high serum TPO antibodies and imaging suggestive of Limbic encephalitis. The role of TPO antibodies in HE is not understood, and thus the role of TPO antibodies in this possible subtype of HE is not clear.
4. Many misdiagnosis of HE are due to the lack of AE antibody testing performed on BOTH serum and CSF, as some AE antibodies show only in serum or CSF or both. Patients should also be tested for less common AE antibodies such as GABAaR and mGluR5.
5. The presence of TPO antibodies in CSF is not well understood. Only one study has looked into this.
6. The NH2-a-enolase antibody could serve as a marker for HE, but further research needs to be done to explore this potential marker.
All in all, HE needs more research so better understanding of the disease can lead to better diagnostic criteria being established.
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