· 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 you funded, over time
Every grant placed by its stated purpose and the recipient’s mission, by year — across FY2017–2024.
Where the money goes
Your grants by size, and where they go.
The 9 grants below total $847,600 — the rows itemised in this filing. The $1,008,046 headline is the total grant expense reported on the return, so the remaining $160,446 is giving the schedule does not break out: grants under the $5,000 itemisation floor, grants to individuals, and grants reported on other schedules. Every figure below describes the itemised rows only.
By grant size · FY2024
- $10k–50k1 grant · $43k
- $50k–250k8 grants · $805k
| Recipient | Amount |
|---|---|
| UNIVERSITY OF UTAH | $190,000 |
| UNIVERSITY OF NEVADA | $145,000 |
| UNVERSITY OF ALBANY | $105,000 |
| UNIVERSITY OF FLORIDA | $105,000 |
| UNIVERSITY OF ILLINOIS | $105,000 |
| WAKE FOREST UNIVERSITY | $55,000 |
| MASSACHUSETTS GENERAL | $50,000 |
| UNIVERSITY OF WASHINGTON | $50,000 |
| VIRGINIA COMMONWEALTH UNIVERS | $42,600 |
Do your dollars go where the need is?
Each grant placed by the hardship in its grantee’s ZIP, then read against the area’s typical level.
Your 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, your grants (FY17–24) land where the poverty rate runs at 14%, against an area that typically sits at 9%. 85% of your dollars go to grantees based in above-average-need neighborhoods. Most of your grants land in higher-need ZIPs.
Matched: human-services grants are those whose grantee’s IRS cause code is Human Services. Placed by people below the poverty linein the grantee’s ZIP, averaged from the tracts in that ZIP; grantee ZIP can differ from where services are delivered.
Which US states your 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
US grants placed by each grantee’s ZIP, which can differ from where services are actually delivered. Need from public data — U.S. Census/ACS, CDC PLACES, Eviction Lab, USDA — shown as context about the area, never attributed to your giving. International giving is mapped by the recipient’s country from the same 990filings; comparable need data isn’t available at that grain. 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.
Where the work is directed
The same grants, placed two ways — where each recipient sits, and where its stated purpose earmarks the money.
About 7% of Myotonic Dystrophy Foundation Inc’s grant dollars are earmarked, by their stated purpose, for a different county than the recipient’s own address — money that lands at a nonprofit in one place but is meant to do its work in another.
Recipient view: each grant at its grantee’s ZIP, mapped to a county. Directed view: each grant at the county its stated purpose names, falling back to the recipient’s county when the purpose names no place; US grants only. A county shows only if it carries the top 95% of that view’s dollars. Purposes are read from the foundation’s own 990 grant descriptions.
Who you back again
Which organizations you funded more than once, and which you funded a single time. Each grantee is matched to its own filings.
And the relationships you keep tend to grow: grantees you re-up on have seen median revenue of +54% since the first grant, against +51% for the ones you 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
First-time = a grantee’s first year in your filing window; renewed = funded in an earlier year too. As a portfolio matures the renewed share naturally climbs — once funded, an org stays “renewable” — so the signal is the years that buck it (a new-grantee intake wave). 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
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
- GGRIMNone grant, 2022 · $105k
Repeat = funded in two or more distinct years; growth and survival are read from each grantee’s own subsequent IRS filings.
The map has a center of gravity: the average direction from the rest of the sector toward the organizations the foundation funds — the shape of its giving. Scoring every nonprofit along that direction surfaces the ones that look most like the portfolio. These are the closest matchesthat aren’t grantees — a resemblance in what they say they do, not a recommendation.
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.
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…
We educate the next generation of leaders to improve the health of our society.
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…
Please see schedule o
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…
See Form 990, Part I, Line 1, Description of Organization Mission.
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…
Fred hutch cancer center ("fred hutch") unites innovative research and compassionate care to prevent and eliminate cancer and infectious disease. continued on schedule o
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.
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…
The graduate school of the stowers institute for medical research ("gssimr") exempt purpose is to provide graduate education that will prepare scholars for scientific research in the biological sciences.
For reference, the grantee most central to the portfolio’s shape is The Board of Trustees of the Leland Stanford Junior University and the most unlike its peers is The Scripps Research Institute. Resemblance is measured on each organization’s own IRS 990 mission text; it reflects how work is described, not its quality or impact.
10 grantees tracked through their own filings, 2017–2025.
Each one resolved to its own IRS returns and tracked year by year — your grant beside their revenue from every source. Association, dated; never a causal claim.
Counted here: distinct organizations you funded across 2017–2025, 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; the rest are funded organizations whose filings we could not track year by year.
Where your money sits — by cause, then by grantee
Each org by its size and your share of it — top-left is where you’re load-bearing
Go grantee by grantee — a decade per org, and how each moved after you funded them
A decade per grantee — revenue shaded, your 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 Emory University ↗
- Who funds WAKE FOREST UNIVERSITY HEALTH SCIENCES ↗
Government reliance of your grantees
Every dot is one organization Myotonic Dystrophy Foundation Inc funds. Left–right is the share of its income from government; up–down is the share from you. Bigger dots raise more. Filter to federal or a single department — and drag the year to watch it move.
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 your grant caused the public funding. Coverage is precision-first — a floor, not 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 12–24 months.