Massachusetts · Nonprofit
FSHD SOCIETY
FSHD SOCIETY (Massachusetts) receives grants from 108 organizations whose IRS filings report $4,171,002 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($1,030,653). 55 of them have funded it in more than one year, and 67% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2024
- $4.9M
- Funders on record
- 108
- Grants received
- $4.2M
- Net assets
- $4.7M
What Fshd Society does
Mission
Find treatments and a cure for facioscapulohumeral muscular dystrophy (fshd) while empowering our families.
As stated on its FY2024 Form 990.
Programs
Research the society seeks to accelerate research to expedite treatments and a cure for fshd muscular dystrophy. Organizing and funding research into the causes of fshd, and, ultimately developing treatments and a cure, is the society's core mission.
$1,945,709 spentof which $146,046 as grants$200,893 earned by the program45% of program spendingPatient advocacy and educationthe society seeks to enlarge, engage, & empower an active global community. The Fshd Society's patient advocacy and education programs directly benefit patients and their families by connecting fshd muscular dystrophy patients and families to healthcare providers, research institutions, and support groups, providing high-quality educational materials, organizing educational meetings and conferences, and creating opportunities and support for advocacy and raising public awareness.
$2,335,145 spentof which $132,038 as grants$102,081 earned by the program55% of program spending
The 2 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $4,280,854.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 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 2018 to 2019, from $4.0M to $6.5M (+64%).
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.
Government-grant reliance: 2020 7% · 2021 5%. Grants only. Government contracts and fees sit inside program revenue.
90% of FSHD SOCIETY’s revenue is contributions — more donation-reliant than the typical peer (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 3 of the last 8 reported years ran a deficit.
reserve
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.
Chief executive
Mark Stone
CEO & president
Board chair
James A Chin Sr
Chairman
As listed on its FY2024 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 31 funders to 38 funders, grant income rose $282k → $437k.
22 of 108 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 67% 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 FSHD SOCIETY’s funders (the co-funder graph). Top 30 of 108 funders by total. 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
FSHD SOCIETY has a broad base — no single funder exceeds 25% of grant income, and it takes 5 funders to reach half.
the vertical line marks half of all grant income — 5 funders to its left
69% 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 FSHD SOCIETY.
Largest funder’s share by year: 2017 35% · 2018 39% · 2019 29% · 2020 47% · 2021 19% · 2022 21% · 2023 23% — 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
40% of FSHD SOCIETY's funders are still giving 3 years after their first grant; 51% 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
67% of FSHD SOCIETY'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 $1.4M that is directly attributable, 99% of it comes from funders outside Massachusetts, across 21 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $2.8M arriving through sponsors registered in 16 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
FSHD SOCIETY's revenue grew 52% between 2017 and 2024.
this organization peer median middle 50% of peers· 8,126 health nonprofits $1M–$10M, FY2024
Organizations like FSHD SOCIETY
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 Massachusetts
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
78% of spending goes to programs.
Governance
Public support
83%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 39 states
Part of a family of 1 related entity
- Fshd Global Innovation Hub LLC · disregarded
Screen this organization
A dated, signed PDF of the compliance screen for FSHD SOCIETY: 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 FSHD SOCIETY?
- FSHD SOCIETY (Massachusetts) receives grants from 108 organizations whose IRS filings report $4,171,002 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($1,030,653). 55 of them have funded it in more than one year, and 67% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does FSHD SOCIETY have?
- IRS filings report 108 organizations giving $4,171,002 in grants to FSHD SOCIETY, 55 of which have funded it in more than one year.
- Who is the largest funder of FSHD SOCIETY?
- FIDELITY INVESTMENTS CHARITABLE GIFT FUND is the largest funder on record, with $1,030,653 in grants. The full list of funders is on this page.
- How can an organization like FSHD SOCIETY find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Massachusetts. 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 2017–2024), and the filings of 108 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 22, 2026. What this page cannot tell you · view filing