Order of the SWNs Foundation
About The Order
A patient-founded nonprofit dedicated to reaching schwannomatosis patients who have spent years in the wrong diagnoses, building the clinical infrastructure to make that delay harder to repeat, and advocating for the care every SWN patient deserves.
Why We Exist
median time from first symptom to correct diagnosis
of schwannomatosis patients had at least one documented misdiagnosis
median number of clinicians seen before a correct diagnosis
Source: Merker VL et al. Am J Med Genet A. 2022 — 97 patients, MGH and Johns Hopkins NF Clinics.
Schwannomatosis patients are not lost because they stopped looking. They are in waiting rooms — seen by neurologists, pain specialists, orthopedic surgeons, and psychiatrists who looked at what was in front of them and could not name it. The diagnostic delay is not caused by patients who failed to seek care. It is caused by a system with no mechanism for connecting the dots it already holds.
The Order of the SWNs Foundation has identified six cognitive failure points that drive this delay — anchoring, availability bias, base rate neglect, confirmation bias, pattern-matching without evidence, and a radiological blindspot. These are not individual failures. They are structural: produced by training programs that never taught the pattern, and EHR systems that hold the diagnostic evidence in plain sight and connect nothing.
The Order of the SWNs Foundation exists because those structures have not fixed themselves, and patients cannot wait.
Four Missions. Every Quest Closes a Gap.
Find the Lost SWNs
Most undiagnosed schwannomatosis patients are not lost — they are in waiting rooms that cannot name what they have. FIND deploys flyers, the Flight of the SWN game, and direct community outreach to reach them before another decade passes.
See FIND quests →FUEL with Coin
The FUEL Fund powers all four missions. The FIND Fund — a designated sub-fund — provides targeted grants for care access: the travel, lodging, and gap costs that fall through every existing assistance program.
See FUEL quests →Forge the Standards
An EHR alert that fires when two or more schwannomas appear in the same record. A physician education kit that reaches clinicians before the chart is opened. Standards accountability that holds NF clinics to published diagnostic criteria. FORGE is the infrastructure that makes misdiagnosis harder to repeat.
See FORGE quests →Flock & Raise a Squawk
Decisions about schwannomatosis — what gets studied, what gets funded, what gets into clinical guidelines — are made in rooms. There has rarely been a SWN patient in any of them. FLOCK gets us in and makes sure we are heard.
See FLOCK quests →Who Is Welcome Here
Every schwannomatosis patient — regardless of subtype, gene status, or how long they waited for a diagnosis. SWN-NEC patients (gene-negative schwannomatosis) are part of this community fully and without qualification. The absence of a confirmed genetic marker does not create a lesser category of patient in this Foundation.
Caregivers, family members, clinicians, researchers, genetic counselors, advocates, and anyone who believes a 16.7-year diagnostic wait is unacceptable. The Order is open. Everyone who shows up to close the gap is welcome.
Foundation Facts
- Legal name
- The Order of the SWNs Foundation
- EIN
- 42-4978003
- Incorporated
- September 10, 2026 — Washington State
- Tax status
- 501(c)(3) application in progress — all donations held in trust pending IRS determination
- Fiscal year
- January 1 – December 31
- Founder
- Sherry Kinkade, President & Board Chair
- Registered in
- Washington State — WA Charitable Solicitation Registration on file
- Primary website
- theorderoftheswns.org
- Contact
- info@theorderoftheswns.org
Join The Order
Patients. Caregivers. Clinicians. SWN researchers. Advocates. If you believe a 16.7-year wait is unacceptable, you belong here.