13/ Having established that I had a paranodopathy (pubmed.ncbi.nlm.nih.gov/35989582/), we next sought to identify the particular antibodies attacking my PNS. A screen identified antibodies against neurofascin 155 (NF155) as the specific culprit.

20/ PLEX was not working and it wasn't clear why. Again with @mattrasband.bsky.social's help, we continued to quantify my NF155 serum levels and discovered that PLEX was removing my autoantibodies, but my body was replenishing them just as quickly.

27/ How do I know my functional gains and sensorimotor improvements relate to #truxima treatment? Again with the help of @mattrasband.bsky.social, we can see that my serum now contains less NF155 compared to earlier samples (even those collected shortly after I received the infusions).

New preprint from the lab 🥳
We made new knock-in zebrafish 🐟 that fluorescently tag endogenous neurofascins. So now, we can live-image neuronal nfasca/NF186 and glial nfascb/NF155 non-invasively, as nerves, nodes of Ranvier and paranodes develop in vivo 🧵👇

www.biorxiv.org/content/10.6...

14/ NF155 is expressed on Schwann cells and plays a critical role in establishing the structure and integrity of the node of Ranvier. See this excellent review from @mattrasband.bsky.social (www.nature.com/articles/s41...)

15/ Knowing the identity of my autoantibodies, I was then able to look into the literature for other patients with NF155 autoantibodies and their features matched mine, notably a lack of response to #IVIG. We then had confidence to change treatment course and start plasmapheresis (PLEX).

28/ These objective self-tests and serum analysis will allow me to continue to monitor my recovery. Based on informal neurology consults, #NF155 #CIDP patients may plateau in their recovery 2-2.5 years after starting #rituximab. Then, 40% are "cured" while the others relapse after stopping treatment

The fluorophores did not perturb neurofascin function, and knock-ins outperformed overexpression approaches. Longitudinal imaging of the same nerves showed that nodes of Ranvier continue to compact in the lateral line after their initial formation - which requires paranodal nfascb/NF155 adhesion.

Marked my own #RareDisease #CIDP #NF155 at the National Hospital for Neurology & Neurosurgery. Things are still on track & I've regained virtually all of the losses caused by my broken elbow last Summer. Sending biggest love & solidarity to all the Zebras out there 🦓 @gaincharity
#RareDiseaseDay

And here is a rendering of a lateral line nerve in our other knock-in reporter of endogenous nfascb/NF155 at paranodes (in green), with myelin in magenta. Look at that green spiral!

🔬 Research

Failure of early B cell tolerance and possible BCR signaling dysregulation underlie NF155-mediated autoimmune nodopat...

Proceedings of the National Academy of Sciences,…

https://littlebunker.com/2026/04/29/research_papers-failure-of-early-b-cell-tolera-4a6e6150/

Gifting a good friend this for a month.
Slava Ukraine.

https://www.counteroffensive.news/?r=nf155&utm_campaign=referrals-subscribe-page-share-screen&utm_medium=web

Neurofascin 155 IgG4 Antibody Test

news.mayocliniclabs.com/2021/10/05/n...

B Cell Tolerance and BCR Signaling Dysregulation in NF155-Mediated Autoimmune Nodopathies https://www.biorxiv.org/content/10.1101/2025.08.10.669569v1

B Cell Tolerance and BCR Signaling Dysregulation in NF155-Mediated Autoimmune Nodopathies https://www.biorxiv.org/content/10.1101/2025.08.10.669569v1