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Dysautonomia Foundation Inc Dba Familial Dysautonomia Foundation at a glanceAlso receives grants: funding profile →

· Public charity

Dysautonomia Foundation Inc Dba Familial Dysautonomia Foundation

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.

$1.2M
Granted FY2024still arriving
3
Grants FY2024still arriving
2
States reached
$1.1M
Largest
01What it fundsRead
02The needRead
03Its granteesRead
04Its fieldRead
01What it funds
01100% classified

What it funded, over time

Every grant placed by its stated purpose and the recipient’s mission, by year, FY2017 to 2024.

Health$9.9MInternational$58kEducation$10k
02FY2024 · 3 grants

Where the money goes

Grants by size, and the largest recipients.

By grant size · FY2024

  • $10k–50k1 grant · $20k
  • $50k–250k1 grant · $96k
  • $250k+1 grant · $1.1M
$96,274
Median grant
2
States reached
$1.1M
Total assets
Largest grants
RecipientAmount
NYU SCHOOL OF MEDICINE$1,116,206
AUTONOMIC RESEARCH LLC$96,274
Montana State University$19,914
02The need
03

Does the money reach high-need areas?

Each grant placed by the hardship in its grantee’s ZIP, against the area’s typical level.

show:

Dollar for dollar, its grants (FY17–24) land where the poverty rate runs at 17%, against an area that typically sits at 13%. 100% of its dollars go to grantees based in above-average-need neighborhoods. Most of its grants land in higher-need ZIPs.

area typical 13%MASSACHUSETT GENERAL HOSPITAL: $51k → 16%NYU SCHOOL OF MEDICINE: $1.5M → 17%VISIO-D CONSULTANTS LLC: $43k → 15%EMORY UNIVERSITY: $10k → 13%NYU SCHOOL OF MEDICINE: $1.2M → 17%VISIO-D CONSULTANTS LLC: $15k → 15%NYU SCHOOL OF MEDICINE: $1.1M → 17%NYU SCHOOL OF MEDICINE: $1.1M → 17%NYU SCHOOL OF MEDICINE: $1.1M → 17%NYU SCHOOL OF MEDICINE: $1.0M → 17%NYU SCHOOL OF MEDICINE: $1.0M → 17%NYU SCHOOL OF MEDICINE: $999k → 17%USA FRIENDS OF TEL AVIV U: $58k → 17%AUTONOMIC RESEARCH LLC: $96k → 17%AUTONOMIC RESEARCH LLC: $93k → 17%AUTONOMIC RESEARCH LLC: $91k → 17%AUTONOMIC RESEARCH LLC: $86k → 17%AUTONOMIC RESEARCH LLC: $83k → 17%AUTONOMIC RESEARCH LLC: $66k → 17%0%20%40%50%more need →
grant to an above-average-need area below average· circle size = grant amount
How this is measured
Matched: human-services grants are those whose grantee’s IRS cause code is Human Services. Placed by people below the poverty line in the grantee’s ZIP, averaged from the tracts in that ZIP.
How this is measured
US grants placed by each grantee’s ZIP, which can differ from where services are delivered. Need from public data (U.S. Census/ACS, CDC PLACES, Eviction Lab, USDA), shown as context about the area, never attributed to the funder’s giving.
03Its grantees
repeat funding

Who it funds again

Organizations funded in more than one year, against those funded once.

99%of every dollar goes to organizations it has funded before.
$9.9M · 5 repeat orgs$119k to everyone else

5 repeat relationships: 3 still active in FY2024, 2 since wound down.

How the two cohorts compare

Re-uppedFunded once

Organizations

5
3

Total granted

$9.9M
$119k

Median revenue growth · since first grant

+76%
+80%

Still filing today

20%
67%

New vs renewed · share of each year

In FY2024, 100% of grant dollars renewed an existing relationship; $0 went to new ones.

50%100%’17’18’19’20’21’22’23’24
RenewedFirst-time

Where new relationships form · theme of each grantee’s first grant

’17’18’19’20’21’22’23’24
EducationInternationalOther
How this is measured
First-time means a grantee’s first year in the filing window; renewed means funded in an earlier year too. The renewed share climbs naturally as a portfolio matures, so the signal is a year that bucks it (a wave of new grantees). The earliest year is left-censored: relationships that predate the data read as new. Theme is the grantee’s IRS cause.

Backed again, and grew

  • NY
    New York University
    8× · 2017–2024 · $9.1M · revenue +76%
  • AR
    AUTONOMIC RESEARCH LLC
    6× · 2019–2024 · $515k
  • MS
    MONTANA STATE UNIVERSITY
    4× · 2017–2024 · $156k

Funded once

  • AF
    American Friends of Tel Aviv Univ
    one grant, 2019 · $58k · revenue -4%
  • MG
    MASS GENERAL BRIGHAM INCORPORATED
    one grant, 2017 · $51k
  • EU
    Emory Universitygraduated
    one grant, 2017 · $10k · revenue +80%
How this is measured

Repeat means funded in two or more distinct years. Growth and survival are read from each grantee’s own subsequent IRS filings.

04Its field
04the grantee network

3 grantees tracked through their own filings, 2017–2024.

Each grant beside the grantee’s revenue from every source, year by year.

How this is measured

Counted here: distinct organizations funded across 2017 to 2024, not grant rows in a single year, so this will not match the grant count on the cover. 3 of the 8 grantees resolved in that span have returns of their own we could reconcile.

Each grantee is resolved to its own IRS returns. Association, dated; never a causal claim.

0
Load-bearing (≥25% of a budget)
0
Early backer (in before they grew)
3/3
Grantees still filing
2/3
Grew since first funded

Where the money sits, by cause and then by grantee

New York University: $9,062,986 · EducationNew York University+1 more: $10,430 · EducationAUTONOMIC RESEARCH LLC: $515,159 · OtherAUTONOMIC…MONTANA STATE UNIVERSITY: $155,716 · OtherMONTANA S…THE UNIVERSITY OF TENNESSEE: $75,000 · OtherTHE UNIVE…VISIO-D CONSULTANTS LLC: $58,013 · OtherVISIO-D C…MASS GENERAL BRIGHAM INCORPORATED: $51,440 · OtherMASS GENE…American Friends of Tel Aviv Univ: $57,600 · International
Education$9,073,416Other$855,328International$57,600

Each grantee by its size and the funder’s share of it; top left is load-bearing

25%50%75%100%$100Mgrantee revenue →↑ funder's share of their budgetNew York University: $9,062,986 over 8y, 0.0% of budgetAmerican Friends of Tel Aviv Univ: $57,600 over 1y, 0.1% of budgetEmory University: $10,430 over 1y, 0.0% of budget
Grantee by grantee: a decade per organization, before and after funding

A decade per grantee: revenue shaded, grants as bars, all rows on one timeline.

  • Who funds New York University ↗
  • Who funds American Friends of Tel Aviv Univ ↗
  • Who funds Emory University ↗

How much its grantees rely on government

Each dot is one organization Dysautonomia Foundation Inc Dba Familial Dysautonomia Foundation funds: left to right is the share of its income from government, bottom to top the share from Dysautonomia Foundation Inc Dba Familial Dysautonomia Foundation. Bigger dots raise more.

2024
’20’21’22’23’24
no gov · 00%0%1%3%5%funder's share of their income ↑0%4%8%11%15%share of the org’s income from government →
    no gov moneyreceives it· size = income
    0get no government money at all
    1report government grants on their 990 we could not trace to a source (not plotted)
    0rely on government for over half their income
    ⤢ axis zoomed · 0–15%
    typical government reliance, FY20–24
    How this is measured
    Government income is each org’s traced federal awards (USASpending grants and contracts) plus state payments (open checkbooks) as a share of its total revenue (IRS Form 990); the self-reported government-grant line (990 line 1e) is carried for cross-check: a grantee that reports government grants we could not trace to a source is left off the chart rather than shown as receiving none. An association, not a claim that a grant caused the public funding. Coverage is precision-first, a floor rather than a census; state records exist for 9 states, so a grantee outside them shows no state figure (dimmed) rather than a false zero. Federal award amounts are obligations, which can span years, so a single-year share is indicative. 990 filings lag 12 to 24 months.

    On method. Every financial figure here is read from IRS e-file XML, the funder’s own 990/990-PF, and from the multi-year returns of the 8 grantees we resolved, each linked to its source. Grantee outcomes are each organization’s own program-service reporting (Form 990, Part III), read as association with funding, never as caused by it. Low-confidence name matches are suppressed rather than guessed. How we build these →

    How this is measured
    Each figure carries one of six labels. Filed is what the funder reported on its return. Official is another government record about an organization, such as a federal award or a charity register, joined by name where no shared identifier exists. Resolved is an identity we worked out where the filing named a recipient without an EIN, kept only above a measured confidence threshold. Computed is arithmetic over those, like themes, portfolio clusters and co-funder strength. Context is a statistic about a place rather than about an organization, which is what the need overlay is: it describes the area a grantee’s address sits in, not where its work lands. Inferred is drawn by a model from text, like the partnerships read out of public news and organization websites. Each is labeled where it appears.

    Generated from the IRS Form 990 e-file return for fiscal year 2024, released 2024. Filings run roughly 12 to 24 months behind; figures are dated accordingly.

    Source object · view filing

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    More from the funding graph

    The unnamed billions
    grants reported with no recipient in the public record
    The regranting layer
    51% of grant dollars land in the regranting layer
    The DAF merry-go-round
    $9.7B circulates between donor-advised funds
    The endowment market
    who holds foundation money, and what just moved
    The camps
    funders cluster by geography, not ideology
    By state
    where grant money is based, and what stays home