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New York · Nonprofit

DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA FOUNDATION

DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA FOUNDATION (New York) receives grants from 82 organizations whose IRS filings report $2,496,886 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($527,497). 44 of them have funded it in more than one year, and 69% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.

Revenue FY2024
$1.6M
Funders on record
82
Grants received
$2.5M
Net assets
$834k
44/82 repeat funderspeak grant-dependency 26%
01What it does

What Dysautonomia Foundation Inc Dba Familial Dysautonomia Foundation does

Mission

The dysautonomia foundation supports and operates programs focused on the medical care, research, social services, and public education for the benefit of people affected by or at risk for familial dysautonomia fd.

As stated on its FY2024 Form 990.

Program

  1. The dysautonomia foundation supports and operates programs focused on the medical care, research, social services, and public education for the benefit of people affected by or at risk for familial dysautonomia fd.

    $1,658,155 spent$730,490 earned by the program
    100% of program spending

The program described on its FY2024 Form 990. Program spending in total: $1,658,155.

02The organization over time

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.

100 = 20172017 Revenue 100 ($1.7M) Expenses 100 ($2.4M) Net assets 100 ($2.1M)2018 Revenue 116 ($2.0M) Expenses 73 ($1.8M) Net assets 107 ($2.2M)2019 Revenue 83 ($1.4M) Expenses 77 ($1.9M) Net assets 90 ($1.9M)2020 Revenue 106 ($1.8M) Expenses 75 ($1.8M) Net assets 84 ($1.8M)2021 Revenue 139 ($2.4M) Expenses 76 ($1.9M) Net assets 110 ($2.3M)2022 Revenue 92 ($1.6M) Expenses 75 ($1.8M) Net assets 98 ($2.0M)2023 Revenue 71 ($1.2M) Expenses 80 ($1.9M) Net assets 63 ($1.3M)2024 Revenue 91 ($1.6M) Expenses 84 ($2.0M) Net assets 40 ($834k)
'17'18'19'20'21'22'23'24
Revenue (91)Expenses (84)Net assets (40)Peer revenue range

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 $2.2M to $1.5M (−31%).

$2.1M
$2.2M
$1.9M
$1.8M
$2.3M
$2.2M
$1.5M
$1.1M
'17'18'19'20'21'22'23'24
Total assetsTotal liabilities

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.

2017
2018
2019
2020
2021
2022
2023
2024
ContributionsProgram revenueInvestmentOther

Government-grant reliance: 2021 5%. Grants only. Government contracts and fees sit inside program revenue.

47% of DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA FOUNDATION’s revenue is contributions — about as donation-reliant as the typical peer (51% for the typical peer).

This organization
Typical peer · 8,611 orgs

Surplus & reserves

Operating surplus or deficit each year, and months of liquidity in hand. 6 of the last 8 reported years ran a deficit.

−$714k
’17
$225k
’18
−$454k
’19
−$13k
’20
$537k
’21
−$253k
’22
−$725k
’23
−$471k
’24
0.8
months of
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.

'17'18'19'20'21'22'23'24
Listed1615151316161716
Joined·+0+0+0+3+0+1+0
No longer listed·1020001
03Who funds it

Who funds it, year by year

2017 → 2023: the base narrowed from 32 funders to 22 funders, grant income rose $217k → $314k.

16 of 82 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 69% 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 DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA FOUNDATION’s funders (the co-funder graph). Top 30 of 82 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

DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA FOUNDATION has a broad base — no single funder exceeds 21% 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

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 DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA FOUNDATION.

21%
largest funder
49%
top three
~10
effective funders

Largest funder’s share by year: 2017 28% · 2018 33% · 2019 29% · 2020 37% · 2021 26% · 2022 33% · 2023 28% — broadly stable.

“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

19% of DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA FOUNDATION's funders are still giving 3 years after their first grant; 54% give in more than one year at all.

first grant+1y+2y+3y+4y+5y+6y

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

69% of DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA 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 $768k that is directly attributable, 59% of it comes from funders outside New York, across 14 states.

NH
IL
NY
PA
NJ
CT
CA
MD
DE
TN
NC
SC
TX
FL

In-state vs out-of-state, by year

’17
’18
’19
’20
’21
’22
’23
New York out of state home

Funder states come from each funder’s own filing. $1.7M 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.

04Its place in the field

Against its field

DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA FOUNDATION receives grants from 82 organizations whose IRS filings report $2.5M to it.

Operating margin−30% · bottom quartile
Months of reserve0.8mo · bottom quartile
Revenue growth (annualized)−1% · bottom quartile

this organization peer median middle 50% of peers· 8,121 health nonprofits $1M–$10M, FY2024

Organizations like DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA 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 New York

Nationally

05Profile & governance

Read directly from this organization’s own Form 990, as neutral context.

Where the money goes

82% of spending goes to programs.

Program 82%Management 15%Fundraising 4%

Governance

16
board members
94%
independent
✓Conflict-of-interest policy✓Whistleblower policy✓Document retention✓Board reviewed the 990✓Audited financials

Public support

99%

Share of support from the public (Schedule A) — the basis for its public-charity status.

Footprint & structure

Part of a family of 1 related entity

  • Tikun Therapeutics Inc · corp_trust

Screen this organization

A dated, signed PDF of the compliance screen for DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA 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.

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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 DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA FOUNDATION?
DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA FOUNDATION (New York) receives grants from 82 organizations whose IRS filings report $2,496,886 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($527,497). 44 of them have funded it in more than one year, and 69% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
How many funders does DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA FOUNDATION have?
IRS filings report 82 organizations giving $2,496,886 in grants to DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA FOUNDATION, 44 of which have funded it in more than one year.
Who is the largest funder of DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA FOUNDATION?
FIDELITY INVESTMENTS CHARITABLE GIFT FUND is the largest funder on record, with $527,497 in grants. The full list of funders is on this page.
How can an organization like DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA FOUNDATION find more funders?
Start with the funders already giving here, then look at the foundations that back similar organizations in New York. 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 82 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