Skip to content
Fshd Society at a glanceMostly funded, not a grantmaker: see who funds it →

· Public charity

Fshd Society

Find treatments and a cure for facioscapulohumeral muscular dystrophy (fshd) while empowering our families.

$1.1M
Granted FY2022
4
Grants FY2022
4
States reached
$143k
Largest
01What it fundsRead
02The needRead
03Its granteesRead
04Its fieldRead
05Through PlinthRead
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 2022.

Health$4.7M
02FY2022 · 4 grants

Where the money goes

Grants by size, and the largest recipients.

How this is measured
The 4 grants below total $413,600, the rows itemized in this filing. The $1,062,750 headline is the total grant expense on the return; the other $649,150 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.
$120,000
Median grant
4
States reached
$5.6M
Total assets
Largest grants
RecipientAmount
JOHNS HOPKINS UNIVERSITY$143,000
UNIVERSITY OF KANSAS MEDICAL CENTER$120,000
UNIVERSITY OF MINNESOTA$83,500
ST LOUIS UNIVERSITY$67,100
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 (FY17–22) land where the poverty rate runs at 12%, against an area that typically sits at 10%. 63% of its dollars go to grantees based in above-average-need neighborhoods. Most of its grants land in higher-need ZIPs.

area typical 10%BOSTON CHILDREN'S HOSPITAL: $125k → 16%UNIVERSITY OF MINNESOTA: $100k → 11%NATIONAL DISEASE RESEARCH INTERCHANGE: $65k → 22%UNIVERSITY OF ROCHESTER: $24k → 14%UNIVERSITY OF KANSAS MEDICAL CENTER: $348k → 5%ST LOUIS UNIVERSITY: $122k → 21%YALE UNIVERSITY: $360k → 12%UNIVERSITY OF UTAH: $50k → 8%UNIVERSITY OF COLORADO DENVER ANSCHUTZ MEDICAL CAMPUS: $116k → 10%UNIVERSITY OF COLORADO: $153k → 12%OHIO STATE UNIVERSITY MEDICAL CENTER DEVELOPMENT & ALUMNI AFFAIRS: $9k → 15%FRED HUTCHINSON CANCER RESEARCH CENTER: $54k → 9%UNIVERSITY OF NEVADA: $190k → 10%CHILDREN'S RESEARCH INSTITUTE: $179k → 8%JOHNS HOPKINS UNIVERSITY: $143k → 19%BOSTON CHILDREN'S HOSPITAL: $76k → 16%UNIVERSITY OF MINNESOTA: $100k → 11%UNIVERSITY OF ROCHESTER: $8k → 14%UNIVERSITY OF KANSAS MEDICAL CENTER: $300k → 5%ST LOUIS UNIVERSITY: $67k → 21%OHIO STATE UNIVERSITY MEDICAL CENTER DEVELOPMENT & ALUMNI AFFAIRS: $8k → 15%UNIVERSITY OF NEVADA RENO: $120k → 10%CHILDREN'S RESEARCH INSTITUTE CHILDRENS NATIONAL HEALTH SYSTEMS: $126k → 8%JOHNS HOPKINS UNIVERSITY: $95k → 19%BOSTON CHILDREN'S HOSPITAL: $3k → 16%UNIVERSITY OF MINNESOTA: $84k → 11%UNIVERSITY OF ROCHESTER: $6k → 14%UNIVERSITY OF KANSAS MEDICAL CENTER: $180k → 5%OHIO STATE UNIVERSITY MEDICAL CENTER DEVELOPMENT & ALUMNI AFFAIRS: $5k → 15%CHILDREN'S RESEARCH INSTITUTE CHILDRENS NATIONAL HEALTH SYSTEMS: $75k → 8%UNIVERSITY OF MARYLAND: $153k → 19%BOSTON UNIVERSITY SCHOOL OF MEDICINE DEPARTMENT OF NEUROLOGY: $158k → 16%UNIVERSITY OF ROCHESTER: $6k → 14%UNIVERSITY OF KANSAS MEDICAL CENTER: $133k → 5%THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL: $193k → 15%CHILDREN'S RESEARCH INSTITUTE CHILDRENS NATIONAL HEALTH SYSTEMS: $64k → 8%UNIVERSITY OF MARYLAND: $20k → 19%BOSTON UNIVERSITY: $59k → 16%UNIVERSITY OF ROCHESTER: $6k → 14%UNIVERSITY OF KANSAS MEDICAL CENTER: $120k → 5%THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL: $91k → 15%THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL: $80k → 15%THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL: $80k → 15%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

WA
MN
NY
MA
NV
OH
PA
CT
UT
CO
MO
MD
KS

Grants abroad, by region: $138k on the FY2024 return

Schedule F, as filed: 2 regions. The IRS asks for region and purpose, not the recipient, so no country or grantee can be named here.

Europe (including Iceland and Greenland)$95k · 69% · 1 grant

Stated purpose: PHARMACOLOGICAL PREVENTION DUX4-MEDIATED MYONECROSIS IN VITRO & IN VIVO

South America$43k · 31% · 1 grant

Stated purpose: TO SUPPORT THE PROMOTION OF CLINICAL TRIAL READINESS IN BRAZIL

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. Grants abroad on Schedule F are filed by region, purpose and amount with no recipient name, so they are shown by region and cannot be placed on the country map or matched to a grantee.
03Its grantees
repeat funding

Who it funds again

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

93%of every dollar goes to organizations it has funded before.
$3.9M · 13 repeat orgs$295k to everyone else

Grantees it renews have grown median revenue +81% since the first grant, against +67% for those funded once.

13 repeat relationships: 4 still active in FY2022, 9 since wound down.

How the two cohorts compare

Re-uppedFunded once

Organizations

13
5

Total granted

$3.9M
$295k

Median revenue growth · since first grant

+81%
+67%

Still filing today

62%
40%

New vs renewed · share of each year

In FY2022, 100% of grant dollars renewed an existing relationship; $0 went to new ones.

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

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

’17’18’19’20’21’22
EducationHealthOther
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

  • UO
    UNIVERSITY OF KANSAS MEDICAL CENTER RESEARCH INSTITUTE
    5× · 2018–2022 · $1.1M · revenue +102%
  • CR
    CHILDREN'S RESEARCH INSTITUTE
    4× · 2017–2021 · $444k · revenue +90%
  • JOHNS HOPKINS UNIVERSITY
    2× · 2017–2022 · $238k · revenue +64%

Funded once

  • NY
    New York Universitygraduated
    one grant, 2017 · $125k · revenue +76%
  • ND
    NATIONAL DISEASE RESEARCH INTERCHANGEgraduated
    one grant, 2017 · $65k · revenue +67%
  • FH
    FRED HUTCHINSON CANCER RESEARCH CENTER
    one grant, 2017 · $54k · revenue +27%
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
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
2
Washington University

The washington university is a co-educational, nondenominational university with a long and distinguished history of teaching, research and (cont'd on schedule o)

Education
3
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
4
Drexel University

Drexel university fulfills its founder's vision of preparing each new generation of students for productive professional and civic lives while also focusing its collective expertise on solving society's greatest problems. drexel is an…

Education
5
University of Miami

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

Education
6
Albany College of Pharmacy and Health Sciences

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

Education
7
University of Southern California

The central mission of the university of southern california is the development of human beings and society as a whole through the cultivation and enrichment of the human mind and spirit. the principal means by which our mission is…

Education
8
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
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
Rhode Island Hospital

As a founding hospital in the brown university health system, rih is committed to its mission: delivering health with care.

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
Trustees of the University of Pennsylvania

The trustees of the university of pennsylvania (the "university") sees itself as having a public service mission. in such regard, the university aims to provide a rich and diverse educational environment for its students; to pioneer…

Education
How this is measured
The grantee most central to the portfolio’s shape is Trustees of Boston University; the most unlike its peers is Ohio State University Foundation. 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

12 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. 12 of the 19 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)
11/12
Grantees still filing
12/12
Grew since first funded

Where the money sits, by cause and then by grantee

NATIONWIDE CHILDRENS HOSPITAL INC: $444,410 · OtherNATIONWIDE CHILDRENS HOSPITAL INCBOARD OF REGENTS NEVADA SYSTEM OF HIGHER EDUCATION: $309,768 · OtherBOARD OF REGENTS NEVADA SYSTEM OF HIGHER ED…UNIVERSITY OF MINNESOTA: $283,498 · OtherUNIVERSITY OF MINNESOTAREGENTS OF THE UNIVERSITY OF COLORADO: $268,537 · OtherREGENTS OF THE UNIVERSITY OF COLORADOTRUSTEES OF BOSTON UNIVERSITY: $216,540 · OtherTRUSTEES OF BOSTON UNIVERSITYUNIVERSITY OF MARYLAND COLLEGE PARK: $172,300 · OtherUNIVERSITY OF MARYLAND COLLEGE PARK+3 more: $105,641 · Other+3 moreUNIVERSITY OF KANSAS MEDICAL CENTER RESEARCH INSTITUTE: $1,081,254 · HealthUNIVERSITY OF KANSAS MEDICAL CENTER RESEARC…CHILDREN'S RESEARCH INSTITUTE: $443,637 · HealthCHILDREN'S RESEARCH INSTITUTEChildren's Hospital Corporation: $200,860 · HealthChildren's Hospital CorporationNATIONAL DISEASE RESEARCH INTERCHANGE: $64,702 · HealthYale University: $470,280 · EducationYale UniversityJOHNS HOPKINS UNIVERSITY: $237,696 · EducationJOHNS HOPKINS UNIVERSITYST LOUIS UNIVERSITY: $189,000 · EducationST LOUIS UNIVERSITYNew York University: $125,000 · EducationNew York UniversityUNIVERSITY OF ROCHESTER: $49,015 · Education+1 more: $21,795 · Education
Other$1,800,694Health$1,790,453Education$1,092,786

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 budgetUNIVERSITY OF KANSAS MEDICAL CENTER RESEARCH INSTITUTE: $1,081,254 over 5y, 0.2% of budgetYale University: $470,280 over 2y, 0.0% of budgetCHILDREN'S RESEARCH INSTITUTE: $443,637 over 4y, 0.3% of budgetJOHNS HOPKINS UNIVERSITY: $237,696 over 2y, 0.0% of budgetTRUSTEES OF BOSTON UNIVERSITY: $216,540 over 2y, 0.0% of budgetChildren's Hospital Corporation: $200,860 over 2y, 0.0% of budgetST LOUIS UNIVERSITY: $189,000 over 2y, 0.0% of budgetNew York University: $125,000 over 1y, 0.0% of budgetNATIONAL DISEASE RESEARCH INTERCHANGE: $64,702 over 1y, 0.8% of budgetFRED HUTCHINSON CANCER RESEARCH CENTER: $53,520 over 1y, 0.0% of budgetUNIVERSITY OF ROCHESTER: $49,015 over 5y, 0.0% of budgetOHIO STATE UNIVERSITY FOUNDATION: $21,795 over 3y, 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 UNIVERSITY OF KANSAS MEDICAL CENTER RESEARCH INSTITUTE ↗
  • Who funds Yale University ↗
  • Who funds CHILDREN'S RESEARCH INSTITUTE ↗
  • Who funds JOHNS HOPKINS UNIVERSITY ↗
  • Who funds TRUSTEES OF BOSTON UNIVERSITY ↗
  • Who funds Children's Hospital Corporation ↗
  • Who funds ST LOUIS UNIVERSITY ↗
  • Who funds New York University ↗
  • Who funds NATIONAL DISEASE RESEARCH INTERCHANGE ↗
  • Who funds FRED HUTCHINSON CANCER RESEARCH CENTER ↗
  • Who funds UNIVERSITY OF ROCHESTER ↗
  • Who funds OHIO STATE UNIVERSITY FOUNDATION ↗

How much its grantees rely on government

Each dot is one organization Fshd Society funds: left to right is the share of its income from government, bottom to top the share from Fshd Society. Bigger dots raise more.

2024
’20’21’22’23’24’25
no gov · 00%0%1%3%5%funder's share of their income ↑0%25%50%75%100%share of the org’s income from government →median 12%
  • Trustees of Boston University: 12% of income from government
  • Johns Hopkins University: 12% of income from government
  • Yale 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
1report 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.
05Through Plinth

Warm introductions · Powered by PlinthPlus

How do I get to Fshd Society?

Find your warmest path to Fshd Society through trustees and officers whose names appear on both boards. Search for your organization and Plinth traces the shortest route it can evidence.

Each link is a name appearing on two organizations’ public IRS 990 filings, matched on that name and, where the filings support it, on location. A same-state match has geographic support, which is a second matching feature rather than confirmation that the two are one person; a cross-state one is the likeliest to be two people who share a name. Every hop shows its tier, low-confidence and distant paths are held back rather than guessed, and it is worth confirming the person before you use the introduction.

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 19 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 2022, released 2022. Filings run roughly 12 to 24 months behind; figures are dated accordingly.

Possibly out of date. A more recent filing (FY2024) is on record and reports $278k of grant expense, but none of it to a named recipient. On a Form 990 that can mean grants abroad, filed by region only (Schedule F), grants under $5,000, which are not itemized, or a schedule referenced as an attachment the e-file does not carry. The figures above are therefore from FY2022, the most recent year this funder named its grantees.

Source object · view filing

Play a game based on Fshd Society’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