Washington · Nonprofit
Spinal CSF Leak Foundation
Spinal CSF Leak Foundation (Washington) receives grants from 14 organizations whose IRS filings report $460,270 to it, the largest being Schoemaker Family Foundation ($170,000). 9 of them have funded it in more than one year, and 58% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $118k
- Funders on record
- 14
- Grants received
- $460k
- Net assets
- $338k
What Spinal CSF Leak Foundation does
Mission
The Spinal CSF Leak Foundation is a 501(c)(3) nonprofit organization dedicated to reducing the suffering of any person affected by intracranial hypotension or spinal cerebrospinal fluid leak.
As stated on its FY2025 Form 990-EZ.
Programs
The Spinal CSF Leak Foundation is a 501(c)(3) nonprofit organization dedicated to reducing the suffering of any person affected by intracranial hypotension or spinal cerebrospinal fluid (CSF) leak. The organizations educational programs provide broad public benefit by increasing access to accurate medical information, improving health literacy, reducing diagnostic delays, and strengthening community support. Online educational resources on the Spinal CSF Leak Foundations website this year included expanding a Physician Directory, increasing patient and clinician resources about spinal CSF leak, and adding to an extensive online educational video library. More than 800 individuals from the United States and internationally registered for the Spinal CSF Leak Foundations annual Spinal CSF Leak: Bridging the Gap Conference, where the attendance was free for patients worldwide whether attending in person or virtually. This unique conference integrated physician and medical professional presentations with patient presentations sharing lived experience of the condition, and the agenda included both physician, medical professional, and patient perspectives in diagnosis, imaging,…
$30,159 spent66% of program spendingThe Spinal CSF Leak Foundation advanced public and community awareness of intracranial hypotension or spinal CSF leak through national digital outreach and educational campaigns. The annual awareness campaign, leakweek, featured myth-and-fact posts created in collaboration with international patient nonprofits in the field, along with city and state proclamations and 15 landmark light-ups across 15 states in the United States, increasing national visibility of spinal CSF leak. The Spinal CSF Leak Foundation also hosted its annual duradash activity challenge, inviting participants to log 150 minutes of activity to raise awareness and funds. Program expenses for this initiative included use of a peer-to-peer fundraising platform to support participation and outreach. The Spinal CSF Leak Foundations digital awareness footprint continued to grow and includes 15,698 Inspire community members, more than 11,000 Facebook followers, 5,860 YouTube subscribers, more than 2,500 Instagram followers, and over 150,000 page views on its website. These platforms serve as accessible channels for patients, caregivers, and clinicians seeking reliable information, emotional support, and connection…
$10,549 spent23% of program spendingThe Spinal CSF Leak Foundation advanced research through continued development of its international patient registry and by expanding free public access to scientific literature relevant to spinal CSF leak. Registry development activities included survey refinement and multiple rounds of testing by patients and volunteers. Once launched, the international patient registry will support patient-driven data collection, research collaboration, and improved understanding of diagnostic pathways and treatment outcomes. The Spinal CSF Leak Foundation also expanded its online publication abstract library by adding more than 100 abstracts from newly published scientific papers during the fiscal year. By providing centralized access to current research at no cost, the Spinal CSF Leak Foundation reduced financial and access barriers for patients, clinicians, and researchers seeking up-to-date information on diagnostic methods, imaging advances, treatment outcomes, and emerging research in the field.
$4,697 spent10% of program spending
The 3 programs described on its FY2024 Form 990-EZ. Program spending in total: $45,405.
The organization over time
Each line starts at 100 in 2018, so what you read is the shape rather than the size: 150 means half as much again as 2018, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2021 to 2022, from $218k to $288k (+32%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
99% of Spinal CSF Leak Foundation’s revenue is contributions — more donation-reliant than the typical peer (82% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 1 of the last 8 reported years ran a deficit.
reserve
Who funds it, year by year
2017 → 2023: the base broadened from 1 funder to 4 funders, grant income rose $12k → $33k.
8 of 14 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 58% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of Spinal CSF Leak Foundation’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
Spinal CSF Leak Foundation leans on a few funders — its largest provides 37% of grant income and the top three 64%; half comes from just 2 funders.
the vertical line marks half of all grant income — 2 funders to its left
58% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund Spinal CSF Leak Foundation.
Largest funder’s share by year: 2017 100% · 2018 62% · 2019 66% · 2020 54% · 2021 41% · 2022 45% · 2023 53% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
83% of Spinal CSF Leak Foundation's funders are still giving 3 years after their first grant; 64% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
58% of Spinal CSF Leak Foundation's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $195k that is directly attributable, 89% of it comes from funders outside Washington, across 6 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $265k arriving through sponsors registered in 7 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
Spinal CSF Leak Foundation receives grants from 14 organizations whose IRS filings report $460k to it.
this organization peer median middle 50% of peers· 7,883 health nonprofits $100k–$1M, FY2025
Organizations like Spinal CSF Leak Foundation
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Washington
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Public support
100%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Screen this organization
A dated, signed PDF of the compliance screen for Spinal CSF Leak Foundation: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds Spinal CSF Leak Foundation?
- Spinal CSF Leak Foundation (Washington) receives grants from 14 organizations whose IRS filings report $460,270 to it, the largest being Schoemaker Family Foundation ($170,000). 9 of them have funded it in more than one year, and 58% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does Spinal CSF Leak Foundation have?
- IRS filings report 14 organizations giving $460,270 in grants to Spinal CSF Leak Foundation, 9 of which have funded it in more than one year.
- Who is the largest funder of Spinal CSF Leak Foundation?
- Schoemaker Family Foundation is the largest funder on record, with $170,000 in grants. The full list of funders is on this page.
- How can an organization like Spinal CSF Leak Foundation find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Washington. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2018–2025), and the filings of 14 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing