Our MissionsOur Quests

The Inspire community, Facebook and Reddit chronic pain groups, surveys, and direct referral from any Order member. SWN patients are lost in the wrong diagnoses, wrong waiting rooms, and wrong specialties. Every pair of eyes in The Order is a potential diagnosis.

The "Are You a SWN?" flyer puts the diagnostic pattern in language patients already use — chronic pain, nerve tumors, a diagnosis that keeps getting revised. It belongs in every chronic pain waiting room, every neurology and pain management office, and every fibromyalgia and spine forum where an undiagnosed SWN is already searching for an explanation. Print it. Post it. Send it to a chronic pain group. Every pair of eyes is a potential diagnosis someone has been waiting years for.

Flight of the SWN is a patient-finder disguised as a game. The diagnostic journey — the misdiagnoses, the wrong rooms, the years of searching — is the game's structure. Every share, every player who posts their score, every referral to a chronic pain or gaming community puts the SWN pattern in front of someone who may be years into their own unexplained journey. The game is live. Getting it in front of people is the active quest.

Getting a found patient to expert care — or to a clinical trial site like STARFISH at MGH — means confronting the full weight of what stands between them and the door: distance, travel cost, lodging, caregiver coverage, and lost wages. The FIND Fund will work through every available source first — insurance, institutional assistance programs, and trial sponsor support — and provide targeted grant assistance for costs that fall through everything else. Every patient who reaches out will be documented and prioritized; direct grants are the primary intended use of FIND Fund resources as the foundation grows.

Pre-clinical data validated GsMTx-4 — derived from tarantula venom — as a precise Piezo1/Piezo2 channel blocker in a schwannomatosis pain model. Human trials were the next step. The funding was cut. We advocate for renewed funding and make sure the science is never quietly lost.

A well-designed social media fundraising challenge raises funds for the FUEL Fund and simultaneously puts The Order in front of people who have never heard of schwannomatosis — expanding the donor base, the flock, and the pool of people who might recognize the diagnostic pattern. This quest is in design: the right format, platform, specific ask, and seed participants are being identified. When it launches, every challenge participant who joins the Order becomes a part of FIND and FLOCK, not just FUEL.

A Best Practice Advisory in Epic that fires automatically when two or more schwannoma ICD-10 codes appear in a patient record — and the same logic via FHIR CDS Hooks for Cerner, Meditech, and every other major EHR platform. Right now the pattern sits in the record, invisible. The specification will be developed in partnership with academic medical centers that have existing Epic infrastructure; clinical champion relationships are the first step.

The 2022 Plotkin consensus established diagnostic criteria for all SWN subtypes. Any provider that claims schwannomatosis expertise has made a promise to their patients — that they know what they are looking at. This quest documents where those criteria are not being applied and makes that documentation accessible to patients, clinicians, and the bodies that set clinical standards. When a provider says it knows how to treat a SWN, it should know how to treat a SWN — especially the lesser-known subtypes most likely to be missed.

A found patient needs a door to walk through. The Order maintains a searchable directory of clinics and individual physicians with identified schwannomatosis expertise — continuously updated with new information about each provider, their published work, and how they describe their SWN capabilities. For a patient who has just been told they may have schwannomatosis, or who has spent a decade in the wrong waiting room, the directory is the difference between knowing there is a place to go and not knowing. Keeping it accurate, complete, and current is part of holding the standard.

The physician education strategy targets two audiences with two tools. Tier 1 — for NF specialists, neuro-oncologists, and neuromuscular clinicians — is a full clinical reference: all SWN subtypes, diagnostic criteria, imaging protocols, genetic testing pathways, and referral standards. Tier 2 — for general neurology, primary care, and any clinician who might see a schwannoma in the record — is a concise recognize-and-refer card: the two-schwannoma rule, the correct ICD-10 codes, and exactly where to send the patient. The physician champion model begins with the highest-leverage first contact and builds outward. The EHR alert catches the pattern in the software; the media kit reaches the clinician before the chart is ever opened.

SWN specialists are concentrated at a handful of institutions. Most patients cannot reach them because they live in the wrong state. The Interstate Medical Licensure Compact is active in most U.S. states and permits physicians to see patients across state lines by video — but most SWN specialists have not yet applied for multi-state licenses. The Order intends to advocate for SWN specialist participation in the Compact so that geography stops being the reason a patient cannot reach the clinician who knows what they have. Access to the standard of care is part of the standard itself.

SWN patients repeatedly traveling to a single institution is one of the largest barriers to trial participation. Decentralized trial design — distributing data collection, site visits, and monitoring so patients can participate from closer to home — is an active area of work in the SWN research community. If trials come to patients instead of requiring patients to come to trials, the population of eligible and willing participants expands dramatically. The Order intends to support this work and advocate for decentralized trial design as a clinical standard, not an exception.

In 2027, schwannomatosis and rare disease conferences bring together researchers, clinicians, patient advocates, and funders in the same rooms where research priorities, funding conversations, and clinical standards get discussed. The Order intends to be there with a table, organized and present. No SWN should miss the table because they cannot afford the room — patient travel grants are a priority when FIND Fund resources are available. Conference costs funded through the FUEL Fund.

The NF Registry — "Patients Powering Progress for NF" — is CTF's long-running patient enrollment platform, founded in 2012 and relaunched in May 2026 on NORD's IAMRARE platform. It covers NF1, NF2-SWN, and schwannomatosis. More than 11,000 participants are enrolled worldwide. Patients register themselves — no physician referral required — and the registry connects them to clinical trials and supplies anonymized data to researchers. It is the largest NF patient registry in existence and the one researchers already use.

The Order does not build a competing registry. Our role is simpler: find every unregistered SWN and get them enrolled. Every SWN patient we find who joins the registry makes the count more complete and the research that follows more representative of who we actually are.

Schwannomatosis and rare disease conferences bring the right people into the same room a few times a year. The Round Table keeps that conversation going the rest of the time — patients, researchers, clinicians, advocates, genetic counselors, and radiologists at one table with no hierarchy. Until now there was rarely a SWN patient in the room. The Round Table changes that.