Maryland · Nonprofit
The Stiff Person Syndrome Research
The Stiff Person Syndrome Research (Maryland) receives grants from 13 organizations whose IRS filings report $785,969 to it, the largest being Silicon Valley Community Foundation ($600,000). 4 of them have funded it in more than one year, and 97% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2024
- $622k
- Funders on record
- 13
- Grants received
- $786k
- Net assets
- $1.2M
What The Stiff Person Syndrome Research does
Programs
Registry Development SPSRF advanced its patient registry with NORD leading to a July 2025 launch for global SPS data collection and research
$82,296 spentAwareness & Connection Expanded awareness with new website SPS neurologist directory & a symposium of 350 people from 17 countries
$51,547 spentClinician Education Enhanced clinician education and worked with experts to reduce diagnostic delays & improve care
$33,409 spent
The 3 programs described on its FY2024 Form 990-PF.
The organization over time
Each line starts at 100 in 2020, so what you read is the shape rather than the size: 150 means half as much again as 2020, 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 2022 to 2023, from $431k to $1.0M (+132%).
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Who funds it, year by year
2021 → 2023: the base broadened from 1 funder to 5 funders, grant income fell $600k → $33k.
8 of 13 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 97% 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 The Stiff Person Syndrome Research’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
The Stiff Person Syndrome Research leans on a few funders — its largest provides 76% of grant income and the top three 88%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
97% 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 The Stiff Person Syndrome Research.
Largest funder’s share by year: 2021 100% · 2022 100% · 2023 46% — 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.
Where its funders are
97% of The Stiff Person Syndrome Research'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 $27k that is directly attributable, 100% of it comes from funders outside Maryland, across 5 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $759k 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
The Stiff Person Syndrome Research has grown faster than three-quarters of the 13,754 health nonprofits its size.
this organization peer median middle 50% of peers· 13,754 health nonprofits $100k–$1M, FY2024
Organizations like The Stiff Person Syndrome Research
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 Maryland
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Screen this organization
A dated, signed PDF of the compliance screen for The Stiff Person Syndrome Research: 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 The Stiff Person Syndrome Research?
- The Stiff Person Syndrome Research (Maryland) receives grants from 13 organizations whose IRS filings report $785,969 to it, the largest being Silicon Valley Community Foundation ($600,000). 4 of them have funded it in more than one year, and 97% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does The Stiff Person Syndrome Research have?
- IRS filings report 13 organizations giving $785,969 in grants to The Stiff Person Syndrome Research, 4 of which have funded it in more than one year.
- Who is the largest funder of The Stiff Person Syndrome Research?
- Silicon Valley Community Foundation is the largest funder on record, with $600,000 in grants. The full list of funders is on this page.
- How can an organization like The Stiff Person Syndrome Research find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Maryland. 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 FY2024 (financials across 2020–2024), and the filings of 13 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