The Science Behind Schwannomatosis

GsMTx-4 from tarantula venom targets the exact pain channel that SWN tumors activate. The most mechanistically precise compound ever tested in this disease. Proof of mechanism published. Funding gone.

• GsMTx-4 — Piezo1 & Piezo2 inhibitor
• Gutierrez et al. 2026 — proof of mechanism
• Dooku1 — synthetic successor candidate
• Researcher interview — August 2026

What each SWN gene does, what goes wrong when it mutates, and what the clinical differences mean for patients — from diagnosis to treatment eligibility.

• SMARCB1
• LZTR1
• NF2 — NF2-SWN
• NEC — SWN-NEC — gene-negative
• NOS — SWN-NOS — unclassified

Trials actively recruiting SWN patients, plus recently closed studies awaiting or reviewing results. STARFISH and INTUITT-NF2 are open now.

• INTUITT-NF2Recruiting
• STARFISHRecruiting
• TanezumabAwaiting Results
• VistusertibCompleted 2019

The laboratory work behind schwannomatosis treatment — cell cultures, mouse models, zebrafish tanks. Where the science is, before it becomes a trial.

• Hippo Pathway — YAP/TAZ
• FAK — Focal Adhesion Kinase
• Piezo1/Piezo2 — Mechanosensitive Channels
• MEK/ERK Signaling
• ErbB/HER Receptors (NF2-SWN)
• Voltage-Gated Sodium Channels

Every paper cited anywhere on this site — full citation, abstract, and direct links. When you see a statistic, this is where it comes from.

• M et al. 2026 — Cancers
• M et al. 2026 — Cells
• I et al. 2026 — Translational Pediatrics
• Y et al. 2026 — Advanced Science

Old names persist in records, insurance codes, and clinic notes for decades. Here is how the language changed and why it matters for your care.

• Neurofibromatosis Type 2 → NF2-SWN
• Neurofibromatosis Type 3 → Schwannomatosis (SWN)
• Bilateral Acoustic Neurofibromatosis → NF2-SWN
• NF2-Related Schwannomatosis → NF2-SWN
• Schwannoma, acoustic, bilateral → NF2-SWN — vestibular schwannomas

Recorded presentations, clinical webinars, and patient voices — from NF Summits, CTF webinars, research conferences, and independent channels. Full transcripts available for expert lectures.

• NF Summit 2026: We Are All Advocates - Catalyzing Experiences into Advocacy
• NF Summit 2024: How We Study Pain in Neurofibromatosis and Schwannomatosis
• NF Summit 2024: Improving Interpretation of Your Genetic Testing
• NF2 and Schwannomatosis Webinar: Preclinical Models

Documented SWN cases from around the world — clinical case reports, international presentations, and unusual presentations that expand what we know about this disease.

• In Progress Section being built — international cases incoming
• Submit a case or citation via email
• All languages accepted
• Labeled clearly as case-level evidence

Every new paper or article mentioning schwannomatosis or its genes — pulled automatically from PubMed and Google Alerts as they publish. No manual steps. No delay.

• PubMed — peer-reviewed papers
• Google Alerts — news & web
• SMARCB1 · LZTR1 · NF2 · NEC · NOS
• Updates automatically, daily