· Public charity
Myotonic Dystrophy Foundation Inc
To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.
What it funded, over time
Every grant placed by its stated purpose and the recipient’s mission, by year, FY2017 to 2024.
Where the money goes
Grants by size, and the largest recipients.
How this is measured
By grant size · FY2024
- $10k–50k1 grant · $43k
- $50k–250k8 grants · $805k
| Recipient | Amount |
|---|---|
| UNIVERSITY OF UTAH | $190,000 |
| UNIVERSITY OF NEVADA | $145,000 |
| UNIVERSITY OF FLORIDA | $105,000 |
| UNIVERSITY OF ILLINOIS | $105,000 |
| UNVERSITY OF ALBANY | $105,000 |
| WAKE FOREST UNIVERSITY | $55,000 |
| UNIVERSITY OF WASHINGTON | $50,000 |
| MASSACHUSETTS GENERAL | $50,000 |
| VIRGINIA COMMONWEALTH UNIVERS | $42,600 |
Does the money reach high-need areas?
Each grant placed by the hardship in its grantee’s ZIP, against the area’s typical level.
US giving: 88% of grant dollars ($3.5M). The need read here covers only this US portion; the 12% that went abroad ($455k) is mapped below.
Dollar for dollar, its grants (FY17–24) land where the poverty rate runs at 14%, against an area that typically sits at 9%. 85% of its dollars go to grantees based in above-average-need neighborhoods. Most of its grants land in higher-need ZIPs.
How this is measured
Which US states its grants reach
Beyond the US: 12% of all-years giving ($455k)
3 countries, by the recipient’s country on the filing.
Grants abroad, by region: $158k 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.
Stated purpose: RESEARCH
Stated purpose: RESEARCH
How this is measured
Where the work is directed
The same grants placed two ways: where each recipient sits, and where its stated purpose sends the money.
About 7% of Myotonic Dystrophy Foundation Inc’s grant dollars are earmarked for a different county than the recipient’s own address.
How this is measured
Who it funds again
Organizations funded in more than one year, against those funded once.
Grantees it renews have grown median revenue +54% since the first grant, against +51% for those funded once.
9 repeat relationships: 4 still active in FY2024, 5 since wound down; 5 grantees were first funded in FY2024 (too recent to call).
How the two cohorts compare
Organizations
Total granted
Median revenue growth · since first grant
Still filing today
New vs renewed · share of each year
In FY2024, 40% of grant dollars renewed an existing relationship; $505k went to new ones.
Where new relationships form · theme of each grantee’s first grant
How this is measured
Backed again, and grew
UNIVERSITY OF ROCHESTER3× · 2019–2023 · $468k · revenue +54%- BCBaylor College of Medicine2× · 2020–2021 · $160k · revenue +47%
- TSTHE SCRIPPS RESEARCH INSTITUTE2× · 2018–2019 · $158k · revenue +69%
Funded once
- TJTHE JACKSON LABORATORYgraduatedone grant, 2018 · $199k · revenue +51%
- SUSAPIENZA UNIVERSITY OF ROMEone grant, 2022 · $190k
- UDUNIVERSITE DE MONTREALone grant, 2022 · $105k
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.
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.
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How this is measured
10 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. 10 of the 24 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.
Where the money sits, by cause and then by grantee
Each grantee by its size and the funder’s share of it; top left is load-bearing
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 ROCHESTER ↗
- Who funds THE UNIVERSITY OF FLORIDA FOUNDATION INC ↗
- Who funds THE JACKSON LABORATORY ↗
- Who funds THE BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UNIVERSITY ↗
- Who funds Baylor College of Medicine ↗
- Who funds THE SCRIPPS RESEARCH INSTITUTE ↗
- Who funds The Research Foundation for The State University of New York ↗
- Who funds TMH PHYSICIAN ORGANIZATION ↗
- Who funds WAKE FOREST UNIVERSITY HEALTH SCIENCES ↗
- Who funds Emory University ↗
How much its grantees rely on government
Each dot is one organization Myotonic Dystrophy Foundation Inc funds: left to right is the share of its income from government, bottom to top the share from Myotonic Dystrophy Foundation Inc. Bigger dots raise more.
How this is measured
Play a game based on Myotonic Dystrophy’s filings →