Massachusetts · Nonprofit
NATIONAL TAY-SACHS & ALLIED DISEASES ASS
NATIONAL TAY-SACHS & ALLIED DISEASES ASS (Massachusetts) receives grants from 63 organizations whose IRS filings report $1,975,121 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($396,686). 38 of them have funded it in more than one year.
- Revenue FY2025
- $1.4M
- Funders on record
- 63
- Grants received
- $2.0M
- Net assets
- $2.8M
What National Tay-Sachs & Allied Diseases Ass does
Mission
Ntsad leads the worldwide fight to treat and cure tay-sachs, canavan, gm1, and sandhoff diseases by driving research, forging collaboratiion, and fostering community, supporting families is the center of everything we do.
As stated on its FY2025 Form 990.
Programs
Research: makes grants to scientists through a request for proposal process. These grants are for research projects that involve basic research, translational studies or clinical studies in the areas of neurodegenerative disorders affection the central nervous system.
$731,729 spent58% of program spendingFamily services: provides support to, and advocate for, newly diagnosed families and individuals, families and caregivers actively caring for an affected loved one with tay-sachs, canavan, gm1, or sandhoff disease, and bereaved families and individuals. Connect patient community with researchers and industry partners. Facilitate priviate social media group for affected individuals, families and caregivers.
$434,965 spent35% of program spendingEducation: develop and disseminate resources on tay-sachs, canavan, gm1, and sandhoff diseases to affected individuals, families, and caregivers. Respond to inquiries. Host an annual family conference that includes family interaction, support sessions, and research updates by clinicians, researchers, and industry leaders, consult with members of the scientific community.
$84,158 spent$311,837 earned by the program7% of program spending
The 3 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $1,250,852.
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 2019 to 2020, from $1.6M to $2.2M (+36%).
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: 2021 5%. Grants only. Government contracts and fees sit inside program revenue.
59% of NATIONAL TAY-SACHS & ALLIED DISEASES ASS’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. 2 of the last 9 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
Kathleen Flynn
CEO
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 10 funders to 22 funders, grant income rose $77k → $273k.
14 of 63 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 49% 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 NATIONAL TAY-SACHS & ALLIED DISEASES ASS’s funders (the co-funder graph). Top 30 of 63 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
NATIONAL TAY-SACHS & ALLIED DISEASES ASS has a broad base — no single funder exceeds 20% of grant income, and it takes 4 funders to reach half.
the vertical line marks half of all grant income — 4 funders to its left
55% 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 NATIONAL TAY-SACHS & ALLIED DISEASES ASS.
Largest funder’s share by year: 2017 52% · 2018 27% · 2019 24% · 2020 23% · 2021 29% · 2022 23% · 2023 19% — 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
48% of NATIONAL TAY-SACHS & ALLIED DISEASES ASS's funders are still giving 3 years after their first grant; 60% 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
NATIONAL TAY-SACHS & ALLIED DISEASES ASS draws 94% of its grant income from funders outside Massachusetts, across 21 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $963k arriving through sponsors registered in 10 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
NATIONAL TAY-SACHS & ALLIED DISEASES ASS holds deeper cash reserves than three-quarters of the 4,665 health nonprofits its size.
this organization peer median middle 50% of peers· 4,665 health nonprofits $1M–$10M, FY2025
Organizations like NATIONAL TAY-SACHS & ALLIED DISEASES ASS
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
86% of spending goes to programs.
Governance
Public support
97%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 1 state
Screen this organization
A dated, signed PDF of the compliance screen for NATIONAL TAY-SACHS & ALLIED DISEASES ASS: 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 NATIONAL TAY-SACHS & ALLIED DISEASES ASS?
- NATIONAL TAY-SACHS & ALLIED DISEASES ASS (Massachusetts) receives grants from 63 organizations whose IRS filings report $1,975,121 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($396,686). 38 of them have funded it in more than one year.
- How many funders does NATIONAL TAY-SACHS & ALLIED DISEASES ASS have?
- IRS filings report 63 organizations giving $1,975,121 in grants to NATIONAL TAY-SACHS & ALLIED DISEASES ASS, 38 of which have funded it in more than one year.
- Who is the largest funder of NATIONAL TAY-SACHS & ALLIED DISEASES ASS?
- FIDELITY INVESTMENTS CHARITABLE GIFT FUND is the largest funder on record, with $396,686 in grants. The full list of funders is on this page.
- How can an organization like NATIONAL TAY-SACHS & ALLIED DISEASES ASS 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 FY2025 (financials across 2017–2025), and the filings of 63 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