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The Association for Frontotemporal Degeneration at a glanceMostly funded, not a grantmaker: see who funds it →

· Public charity

The Association for Frontotemporal Degeneration

Promote and fund research into developing better diagnostic processes, therapies, and cures for frontotemporal degeneration (ftd); provide information, education, support and advocacy to persons diagnosed with ftd, their families and caregivers; (continued in sch o) educate physicians and other health professionals about ftd and how to…

$1.9M
Granted FY2025still arriving
6
Grants FY2025still arriving
6
States reached
$700k
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 2025.

Health$18MScience & Tech$555kEducation$300kArts & Culture$95k
02FY2025 · 6 grants

Where the money goes

Grants by size, and the largest recipients.

How this is measured
The 6 grants below total $1,547,368, the rows itemized in this filing. The $1,942,719 headline is the total grant expense on the return; the other $395,351 is giving the schedule does not break out (grants under the $5,000 itemization floor, grants to individuals, grants on other schedules). Every figure below describes the itemized rows only.

By grant size · FY2025

  • $50k–250k4 grants · $560k
  • $250k+2 grants · $987k
$230,000
Median grant
6
States reached
$60M
Total assets
Largest grants
RecipientAmount
ALZHEIMER'S DRUG DISCOVERY FOUNDATION$700,000
THE FTD DISORDERS REGISTRY$287,374
WASHINGTON UNIVERSITY IN ST LOUIS$230,000
STANFORD UNIVERSITY$120,000
UNIVERSITY OF TEXAS AT AUSTIN$109,994
AMERICAN BRAIN FOUNDATION$100,000
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 (FY17–25) land where the poverty rate runs at 15%, against an area that typically sits at 10%. 90% of its dollars go to grantees based in above-average-need neighborhoods. Most of its grants land in higher-need ZIPs.

area typical 10%BIOSENSICS LLC: $400k → 8%BOSTON CHILDREN'S HOSPITAL: $515k → 16%INTERNATIONAL SOCIETY FOR FRONTOTEMPORAL DEMENTIAS: $250k → 6%AMERICAN BRAIN FOUNDATION: $200k → 11%THE FTD DISORDERS REGISTRY: $287k → 7%CHILDREN'S HOSPITAL OF PITTSBURGH: $120k → 11%DREXEL UNIVERSITY: $60k → 22%STANFORD UNIVERSITY: $120k → 8%UNIVERSITY OF CALIFORNIA BERKLEY: $120k → 10%UNIVERSITY OF CALIFORNIA - SAN FRANCISCO: $250k → 10%UNIVERSITY OF CALIFORNIA SAN DIEGO DEPT OF CHEMISTRY AND BIOCHEMISTRY: $120k → 11%UNIVERSITY OF CALIFORNIA LOS ANGELES: $120k → 14%REGENERATIVE RESEARCH FOUNDATION: $60k → 11%THE TANK LTD: $95k → 17%UNIVERSITY OF TEXAS AT AUSTIN: $110k → 10%NORTH TEXAS COMMUNITY FOUNDATION: $200k → 11%MAYO CLINIC - JACKSONVILLE: $565k → 14%UNIVERSITY OF MICHIGAN: $110k → 14%WASHINGTON UNIVERSITY: $495k → 21%ALZHEIMER'S DRUG DISCOVERY PROGRAM: $700k → 13%GEORGIA STATE UNIVERSITY: $120k → 13%EMORY UNIVERSITY: $110k → 14%NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE: $120k → 17%FOUNDATION FOR THE NATIONAL INSTITUTES OF HEALTH: $84k → 8%MASSACHUSETTS GENERAL HOSPITAL: $120k → 16%AMERICAN BRAIN FOUNDATION: $100k → 11%THE FTD DISORDERS REGISTRY: $250k → 7%UNIVERSITY OF CALIFORNIA - BERKELEY: $110k → 10%BLUEFIELD PROJECT TO CURE FTD: $290k → 10%ALZHEIMER'S DRUG DISCOVERY FOUNDATION: $1.4M → 17%MAYO CLINIC JACKSONVILLE: $300k → 14%AMERICAN BRAIN FOUNDATION: $100k → 11%THE FTD DISORDERS REGISTRY LLC: $150k → 7%THE FTD DISORDERS REGISTRY LLC: $150k → 10%ALZHEIMER'S DRUG DISCOVERY FOUNDATION: $1.4M → 17%WASHINGTON UNIVERSITY IN ST LOUIS: $230k → 21%THE FTD DISORDERS REGISTRY LLC: $150k → 10%ALZHEIMER'S DRUG DISCOVERY FOUNDATION: $1.4M → 17%THE FTD DISORDERS REGISTRY LLC: $150k → 10%ALZHEIMER'S DRUG DISCOVERY FOUNDATION: $700k → 17%THE FTD DISORDERS REGISTRY LLC: $100k → 10%ALZHEIMER'S DRUG DISCOVERY FOUNDATION: $700k → 17%THE FTD DISORDERS REGISTRY LLC: $100k → 10%ALZHEIMER'S DRUG DISCOVERY FOUNDATION: $700k → 17%ALZHEIMER DRUG DISCOVERY FOUNDATION: $600k → 17%ALZHEIMER'S DRUG DISCOVERY FOUNDATION: $600k → 17%COLUMBIA UNIVERSITY MEDICAL CENTER: $150k → 17%ICAHN SCHOOL OF MEDICINE: $110k → 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.

Which US states its grants reach

MN
IL
MI
NY
MA
OR
OH
PA
CA
MO
MD
NC
AL
GA
TX
FL
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.

78%of every dollar goes to organizations it has funded before.
$15M · 10 repeat orgs$4.2M to everyone else

Grantees it renews have grown median revenue +43% since the first grant, against +13% for those funded once.

10 repeat relationships: 4 still active in FY2025, 6 since wound down; 1 grantees were first funded in FY2025 (too recent to call).

How the two cohorts compare

Re-uppedFunded once

Organizations

10
24

Total granted

$15M
$4.1M

Median revenue growth · since first grant

+43%
+13%

Still filing today

80%
54%

New vs renewed · share of each year

In FY2025, 92% of grant dollars renewed an existing relationship; $110k went to new ones.

50%100%’17’18’19’20’21’22’23’24’25
RenewedFirst-time

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

’17’18’19’20’21’22’23’24’25
EducationHealthSocial ScienceArts & CultureOther
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

  • AD
    ALZHEIMER'S DRUG DISCOVERY FOUNDATION
    9× · 2017–2025 · $8.3M · revenue +227%
  • TA
    TARGET ALS FOUNDATION INC
    3× · 2020–2022 · $2.5M · revenue +22%
  • TF
    THE FTD DISORDERS REGISTRY LLC
    8× · 2017–2025 · $1.3M · revenue +43% · 33% of their budget

Funded once

  • MC
    MAYO CLINIC
    one grant, 2019 · $565k
  • CH
    Children's Hospital Corporationgraduated
    one grant, 2017 · $515k · revenue +91%
  • BL
    BIOSENSICS LLC
    one grant, 2024 · $400k
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

Closest unfunded matches

The nonprofits that most resemble its grantees but are not funded by it, scored along the direction from the rest of the field toward the portfolio. A resemblance in what they say they do, not a recommendation.

1
New York University

Nyu is a private university with approximately 60,000 matriculating students in 20 schools and institutes. nyu's primary missions are education, research and scholarship, and patient care.

Education
2
Sanford Burnham Prebys Medical Discovery Institute

Sanford burnham prebys medical discovery institute's mission is to advance the biomedical sciences by cultivating the next generation of scientific leaders, providing meaningful opportunities for researchers of all backgrounds to learn,…

Health
3
Albany College of Pharmacy and Health Sciences

We educate the next generation of leaders to improve the health of our society.

Education
4
Fred Hutchinson Cancer Center

Fred hutch cancer center ("fred hutch") unites innovative research and compassionate care to prevent and eliminate cancer and infectious disease. continued on schedule o

Health
5
Hugo W Moser Research Institute At Kennedy Krieger Inc

The hugo w. moser research institute at kennedy krieger, inc. (the "research institute") is an internationally recognized research facility finding answers to problems and injuries that affect a child's developing brain. researchers have…

Science & Tech
6
William Marsh Rice University

As a leading research university with a distinctive commitment to undergraduate education, Rice University aspires to path breaking research, unsurpassed teaching, and contributions to the betterment of our world. It seeks to fulfill this…

Education
7
University of Miami

See Form 990, Part I, Line 1, Description of Organization Mission.

Education
8
Institute for Advanced Study - Louis Bamberger & Mrs Felix Fuld Foundation

The institute for advanced study (the institute) is one of the world's leading centers for theoretical research and intellectual inquiry. see schedule o.

Science & Tech
9
The Johns Hopkins Hospital

For more than 125 years, the mission of the johns hopkins hospital has been to lead the world in the diagnosis and treatment of disease and to train tomorrow's great physicians, nurses and scientists. above all, we aim to provide the…

Health
10
University of Minnesota Physicians

University of minnesota physicians serves as the integrated group practice for the university of minnesota medical school full-time faculty to provide the highest quality healthcare to patients and their families.university of minnesota…

Health
11
Rush University Medical Center

The mission of Rush is to improve the health of the individuals and diverse communities we serve through the integration of outstanding patient care, education, research and community partnerships.

Health
12
New York Genome Center Inc

Operate a state-of-the-art, world-class genomic research center that creates and uses advanced genomics to understand the genetic basis of disease. for more information, see schedule o.

Health
How this is measured
The grantee most central to the portfolio’s shape is University of Chicago; the most unlike its peers is The Tank Ltd. Resemblance is measured on each organization’s own IRS 990 mission text; it reflects how work is described, not its quality or impact.
04the grantee network

25 grantees tracked through their own filings, 2017–2025.

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 2025, not grant rows in a single year, so this will not match the grant count on the cover. 25 of the 39 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.

1
Load-bearing (≥25% of a budget)
2
Early backer (in before they grew)
25/25
Grantees still filing
21/25
Grew since first funded

Where the money sits, by cause and then by grantee

ALZHEIMER'S DRUG DISCOVERY FOUNDATION: $8,299,999 · Social ScienceALZHEIMER'S DRUG DISCOVERY FOUNDATIONTARGET ALS FOUNDATION INC: $2,500,000 · EducationTARGET ALS FOUNDATION INCWASHINGTON UNIVERSITY: $758,453 · EducationWASHINGTON UNIVERSITYTHE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK: $180,000 · Education+11 more: $1,005,000 · Education+11 moreTHE FTD DISORDERS REGISTRY LLC: $1,337,374 · HealthTHE FTD DISORDERS …Children's Hospital Corporation: $515,000 · HealthChildren's Hospita…AMERICAN BRAIN FOUNDATION: $500,000 · HealthAMERICAN BRAIN FOU…The Bluefield Project to Cure Frontotemporal Dementia: $290,000 · HealthThe Bluefield Proj…International Society for Frontotemporal Dementias Inc: $250,000 · HealthInternational Soci…REGENERATIVE RESEARCH FOUNDATION: $120,000 · HealthCHILDREN'S HOSPITAL OF PITTSBURGH FOUNDATION: $120,000 · HealthFoundation for the National Institutes of Health Inc: $109,388 · HealthUNIVERSITY OF CALIFORNIA SAN FRANCISCO: $709,965 · OtherUNIVERSITY OF CALI…MAYO CLINIC: $565,248 · OtherMAYO CLINICBIOSENSICS LLC: $399,999 · OtherBIOSENSICS LLCMAYO CLINIC: $300,000 · OtherMAYO CLINICREGENTS OF THE UNIVERSITY OF CALIFORNIA AT BERKELEY: $230,000 · OtherREGENTS OF THE UNI…MASS GENERAL BRIGHAM INCORPORATED: $180,000 · OtherMASS GENERAL BRIGH…REGENTS UNIV OF CALIFORNIA: $120,000 · OtherNIHNIA: $120,000 · OtherREGENTS OF THE UNIVERSITY OF CALIFORNIA AT SAN DIEGO: $120,000 · OtherUNIVERSITY OF TEXAS AT AUSTIN: $109,994 · OtherREGENTS OF THE UNIVERSITY OF MICHIGAN: $109,784 · Other+3 more: $179,689 · Other+3 moreCOMMUNITY FOUNDATION OF NORTH TEXAS (TAX: $200,000 · PhilanthropyTHE TANK LTD: $95,023 · Arts & Culture
Social Science$8,299,999Education$4,443,453Health$3,241,762Other$3,144,679Philanthropy$200,000Arts & Culture$95,023

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

25%50%75%100%$10M$100Mgrantee revenue →↑ funder's share of their budgetALZHEIMER'S DRUG DISCOVERY FOUNDATION: $8,299,999 over 9y, 6.3% of budgetTARGET ALS FOUNDATION INC: $2,500,000 over 3y, 18% of budgetTHE FTD DISORDERS REGISTRY LLC: $1,337,374 over 8y, 33% of budgetWASHINGTON UNIVERSITY: $758,453 over 3y, 0.0% of budgetChildren's Hospital Corporation: $515,000 over 1y, 0.0% of budgetAMERICAN BRAIN FOUNDATION: $500,000 over 5y, 3.2% of budgetThe Bluefield Project to Cure Frontotemporal Dementia: $290,000 over 1y, 14% of budgetCOMMUNITY FOUNDATION OF NORTH TEXAS (TAX: $200,000 over 1y, 0.3% of budgetTHE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK: $180,000 over 2y, 0.0% of budgetREGENERATIVE RESEARCH FOUNDATION: $120,000 over 2y, 1.7% of budgetCHILDREN'S HOSPITAL OF PITTSBURGH FOUNDATION: $120,000 over 1y, 0.2% of budgetGEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC: $120,000 over 1y, 0.1% of budgetBaylor College of Medicine: $110,000 over 1y, 0.0% of budgetEmory University: $110,000 over 1y, 0.0% of budgetUNIVERSITY OF PITTSBURGH: $110,000 over 1y, 0.0% of budgetICAHN SCHOOL OF MEDICINE AT MOUNT SINAI: $110,000 over 1y, 0.0% of budgetFoundation for the National Institutes of Health Inc: $109,388 over 2y, 0.1% of budgetTHE TANK LTD: $95,023 over 1y, 5.6% of budgetUniversity of Chicago: $85,000 over 2y, 0.0% of budgetTRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA: $60,000 over 1y, 0.0% of budgetJOHNS HOPKINS UNIVERSITY: $60,000 over 1y, 0.0% of budgetCASE WESTERN RESERVE UNIVERSITY: $60,000 over 1y, 0.0% of budgetDREXEL UNIVERSITY: $60,000 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.

Co-funders

Grantmakers whose grantees overlap with this funder’s far more than size alone predicts. Closer means stronger alignment; arcs show where they also fund each other. Here they form a tightly interlocked group: most of these funders back each other's grantees too.

Amyotrophic Lateral S…Rainwater Charitable …National Philanthropi…Vanguard Charitable E…Donor Advised Charita…Fidelity Investments …
Amyotrophic Lateral Sclerosis AssnVA13.6× affinity4 shared granteesties to 5 of 5Hover any node to trace its alignments.Compare side by side →

Open a dossier: Amyotrophic Lateral Sclerosis Assn · Rainwater Charitable Foundation · National Philanthropic Trust · Vanguard Charitable Endowment Program · Donor Advised Charitable Giving Inc · Fidelity Investments Charitable Gift Fund

How this is measured
Affinity is a Gamma-Poisson posterior co-funding rate, re-centered on the typical rate, so thin evidence shrinks toward no signal. Overlap is association, not proof of shared intent.

How much its grantees rely on government

Each dot is one organization The Association for Frontotemporal Degeneration funds: left to right is the share of its income from government, bottom to top the share from The Association for Frontotemporal Degeneration. Bigger dots raise more.

2024
’20’21’22’23’24’25
no gov · 00%6%25%56%100%funder's share of their income ↑0%25%50%75%100%share of the org’s income from government →median 12%
  • Johns Hopkins University: 12% of income from government
  • Children's Hospital Corporation: 10% of income from government
no gov moneyreceives it· size = income
0get no government money at all
3report government grants on their 990 we could not trace to a source (not plotted)
0rely on government for over half their income
typical government reliance, FY20–25
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 39 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 2025, released 2025. Filings run roughly 12 to 24 months behind; figures are dated accordingly.

Source object · view filing

Play a game based on Association for Frontotemporal Degeneration’s filings →

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