NMDAR Encephalitis 🧠 🔥 can happen any season, any time of year… which is why the ExTINGUISH Trial teams are always ready, on call, for all new NMDAR Encephalitis patients across the US, the Netherlands, and Spain.
neuronext.org/projects/nn1...
#MedSky 🩺 #NeuroSky 🧠 #NeuroSKYence
🎙️🧠 A Special Episode of the Podcast:
Have a Listen and Take the challenge — can YOU tell when something isn’t genuine??👇
In an age where so many podcasts (and videos and photos) are no longer REAL, the Neurology Podcast is… 💯 Real Neurologists and Clinicians.
#MedSky #MedEd #NeuroSky
… and we are LIVE! 1st talk of the day at WINO: Dr. Nancy Newman with the most useful, actionable Idiopathic Intracranial Hypertension (IIH) talk I’ve heard in ages!!
@emoryneurocrit.bsky.social
Photo of WINO meeting agenda
👉 Check out this agenda - incredible lineup of internationally-recognized neurology expertise - all at WINO next Friday!!
Come for the education and connection
… Stay for the 60th Anniversay of Neurology Dinner 🧠 🎉
Photo of a water bottle with the ExTINGUISH Trial for NMDAR Encephalitis at the top of a mountain peak in Banff in the background.
Still climbing. ⛰️
Still raising awareness. 🧠
Still enrolling in this critical clinical trial to bring patients with #NMDAR Encephalitis the evidence they so desperately need and deserve. 🤝
youtu.be/dIhD8y-hyPM?si…
🧠🎙️ Dr. Walter Koroshetz (NINDS Director) provides a comprehensive update - covering everything we need to know in 2025 - for all Neurology Clinicians & Neuroscience Researchers -
You will definitely want to have a listen to this 2-part @GreenJournal podcast 👇
#NeuroSkyence #MedSky #Neurosky
Map of the US showing 37 trial site locations for the ExTINGUISH TRIAL FOR NMDAR Encephalitis. Website link: https://neuronext.org/projects/nn111-extinguish/
🧠🔥 Being involved in the ExTINGUISH TRIAL for NMDAR Encephalitis the honor - and challenge - of a lifetime …
And our collective community is making it a reality ❤️
Fantastic updates:
As of 2025: ALL 37 US and 2 EU ExTINGUISH Trial sites are actively enrolling new patients with NMDAR Encephalitis
T-9 days until TSF's SLC Patient Day for Rare Neuroinflammatory Disorders!
Meet our patient & caregiver panelists representing #AE, #CNSVasculitis, #MOGAD, #neurosarcoidosis, #NMOSD or #SPS 🦄
Register: www.tinyurl.com/TSFSLC
Shout out to @staceylclardy.bsky.social for helping us make this happen!
Patients and caregivers are welcome from the Mountain West and beyond.
We are 15 minutes from the SLC airport if you want to see beautiful Utah— including learning about our extensive outdoor accessibility options!— but please do first register below 👇
THANK YOU, patient & caregiver speakers! ❤️🤝🧠
It’s almost here!! 🧠⛰️
We cannot wait to share resources with all of the rare Autoimmune Neurology patients and caregivers -
and importantly, to allow patients and caregivers to meet and learn from each other! 🫶🤝
Reserve your place now -
www.tinyurl.com/TSFSLC
August 16 | Salt Lake City
Join us for a #PatientDay focused on NMOSD, MOGAD, AE, SPS & more. @thesumairafdn.bsky.social
🧠 Ask experts, connect with others, & build community.
Register by 8/13: tinyurl.com/TSFSLC
📣 Saturday August 16 is for PATIENTS, designed by PATIENTS, for free, on what is most helpful in managing rare autoimmune neurologic conditions:
-Navigating insurance + finances
-Partnering with primary care
-Symptom management
-Getting outside to play (adaptively)
-Updates/Tips from the experts
✋ 🛑 We must do better.
If available clinical trials are not discussed and offered to patient/loved ones BEFORE immunotherapy is given, then it is NOT informed care.
KNOWLEDGE = POWER
@extinguishtrial
5/fin
👉Early use of first- and second-line immunotherapy has increased since 2019 but functional outcomes have only improved modestly since 2019.
And yet, patients are often subjected to the full “kitchen sink”of immunotherapies, often without any time given to assess effect 🤔
4/
We evaluated changes in treatment strategies and outcomes in NMDAR Encephalitis since the previous comprehensive review in 2019.
👉No significant change was noted in mortality or relapse rates!
3/
In NMDAR Encephalitis, equipoise may be obscured by undue weight assigned to treatment recommendations based on expert opinion. 🧐
Although helpful in framing an approach, “consensus guidelines” may unintentionally obfuscate the need for high quality studies.
2/
Just published 👉
A NEWLY updated, comprehensive meta-analysis of the treatment of anti-NMDAR encephalitis: Analysis, equipoise, and the urgent need for evidence over anecdote 🧠🔥
Why is this paper so important ?
1/
Photo of Dr Sundquist speaking - Wesley I. Sundquist is an American biochemist. Sundquist is Samuels Chair, Distinguished Professor, and Chair of the University of Utah Department of Biochemistry. Sundquist's research focuses on cellular, molecular and structural biology of retroviruses, particularly Human Immunodeficiency Virus (HIV), and on cellular membrane remodeling by the Endosomal Sorting Complexes Required for Transport (ESCRT) pathway.
Kicking off the annual Neurology Baringer Symposium with a fantastic lecture by Dr. Wesley Sundquist PhD (recently named to the 2025 #TIME100 list) - what a perfect translational talk for our graduating trainees!
14.05.2025 15:11 — 👍 2 🔁 0 💬 0 📌 0
The Trial infrastructure would not be possible without the support of the National Institute of Neurological Disorders and Stroke (NINDS) via the NeuroNEXT Clinical Trial Network.
About the ExTINGUISH Trial:
youtu.be/dIhD8y-hyPM?...
With gratitude, we thank everyone who is doing the unseen work for the trial participants - for the hours spent navigating bureaucratic challenges, for the nights, the weekends, the road trips 🚗 for house calls…
26.04.2025 16:39 — 👍 0 🔁 0 💬 1 📌 0
-The devoted ExTINGUISH team -
consisting of so many study coordinators, data/trial/regulatory/ethical experts, pharmacists, lab specialists, statistical experts, nurses, physicians and patient advocacy groups -
dedicate themselves to getting answers and resources for these patients. ❤️
Quote pictured from Susannah Cahalan, author of the book Brain on Fire about her experience with NMDAR Encephalitis. The authors website (including other books): https://www.susannahcahalan.com
One patient at a time, we are getting closer… closer to one day being able to tell patients and families with certainty that what we propose for treatment options actually have strong evidence behind them… Right NOW, there are *finally* clinical trials available as an option for patients 🙏
26.04.2025 16:39 — 👍 0 🔁 0 💬 1 📌 0
📣 We are able to offer the trial to affected adolescents and adults — new NMDAR Encephalitis patients age 12 and up have access to the Trial resources 🤝
📣 No matter where in the US, we will get patients access to the trial - just call the hotline
#NeuroSky #AcademicSky
#PedsSky #MedSky
Map of the US showing 37 trial site locations for the ExTINGUISH TRIAL FOR NMDAR Encephalitis. Website link: https://neuronext.org/projects/nn111-extinguish/
🧠🔥 Being involved in the ExTINGUISH TRIAL for NMDAR Encephalitis the honor - and challenge - of a lifetime …
And our collective community is making it a reality ❤️
Fantastic updates:
As of 2025: ALL 37 US and 2 EU ExTINGUISH Trial sites are actively enrolling new patients with NMDAR Encephalitis
We see you ❤️💔
12.04.2025 17:24 — 👍 1 🔁 0 💬 0 📌 0We need a bigger room for the History of Neurology course next year - thrilled to see so many people standing in the back and sitting at the front for the History of Film @aanmember.bsky.social #AANAM with Eelco Wijdiks @paediatrix.bsky.social and Alexis Simpkins!
07.04.2025 21:13 — 👍 19 🔁 2 💬 2 📌 0
What a treat to be a part of the Neurology Podcast and Neurology Minute Podcast! It just keeps getting better! Take a listen ❤️🎉💗🙏🏽🌺🧠 #AANAM @aanmember.bsky.social @staceylclardy.bsky.social
08.04.2025 17:51 — 👍 3 🔁 2 💬 0 📌 0
Dr. Vivek K. Reddy, MD, MMM of @uofuneurology.bsky.social speaking at the @aanmember.bsky.social Annual Meeting on
“Technology and Policy Impacts to Practice”
at
C10: Neurology Update course.
How appropriate to close out with the change that is happening now … and in the very near future 🧠
Dr. Trey Bateman @renegadesynapse.bsky.social of Wake Forest University School of Medicine giving a fast-paced, info-packed “Updates in Cognitive and Behavioral Neurology” at C10: Neurology Update at the @aanmember.bsky.social Annual Meeting.
#AANAM
Dr. Kathryn Krulisky of @uofuneur providing “Updates in Epilepsy” as part of the comprehensive C10 Neurology Update Course at the @aanmember.bsky.social Annual Meeting in San Diego! 🧠
#AANAM
