California · Nonprofit
MYOTONIC DYSTROPHY FOUNDATION INC
MYOTONIC DYSTROPHY FOUNDATION INC (California) receives grants from 84 organizations whose IRS filings report $5,818,048 to it, the largest being NETWORK FOR GOOD ($1,573,142). 51 of them have funded it in more than one year, and 75% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2024
- $3.7M
- Funders on record
- 84
- Grants received
- $5.8M
- Net assets
- $3.9M
What Myotonic Dystrophy Foundation Inc does
Mission
To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.
As stated on its FY2024 Form 990.
Programs
Research - We raise additional funds in the private sector in order to accelerate further understanding of the disease through research. MDF supports both clinical and scientific research with a goal of finding a treatment and eventually a cure for this chronic, degenerative disease.
$1,664,747 spentof which $1,008,046 as grants51% of program spendingEducation - We strive not only to help affected individuals, their families and medical professionals understand this disorder, but also to raise awareness about the disease in the general population. MDF supports and helps organize conferences for affected families and medical professionals.
$1,289,926 spent$1,624 earned by the program39% of program spendingAdvocacy - In collaboration with other organizations, we are establishing and perpetuating local and regional support groups to offer emotional support and help to educate families about this disease. In addition to providing information about available services, we advocate for increased funding for myotonic dystrophy research and patient support.
$338,956 spent10% of program spending
The 3 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $3,293,629.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2022 to 2023, from $6.8M to $5.5M (−20%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2020 6% · 2021 3%. Grants only. Government contracts and fees sit inside program revenue.
99% of MYOTONIC DYSTROPHY FOUNDATION INC’s revenue is contributions — more reliant on donations than three-quarters of its peers (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 2 of the last 8 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Tanya Stevenson
CEO
Board chair
Jeremy Kelly
Chair
As listed on its FY2024 Form 990.
The chief executive listed changed between the FY2019 and FY2020 filings.
Who funds it, year by year
2017 → 2023: the base broadened from 20 funders to 39 funders, grant income rose $593k → $868k.
25 of 84 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 75% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of MYOTONIC DYSTROPHY FOUNDATION INC’s funders (the co-funder graph). Top 30 of 84 funders by total. Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
MYOTONIC DYSTROPHY FOUNDATION INC has a broad base — no single funder exceeds 27% of grant income, and it takes 4 funders to reach half.
the vertical line marks half of all grant income — 4 funders to its left
75% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund MYOTONIC DYSTROPHY FOUNDATION INC.
Largest funder’s share by year: 2017 35% · 2018 38% · 2019 43% · 2020 39% · 2021 33% · 2022 26% · 2023 31% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
38% of MYOTONIC DYSTROPHY FOUNDATION INC's funders are still giving 3 years after their first grant; 61% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
75% of MYOTONIC DYSTROPHY FOUNDATION INC's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $1.5M that is directly attributable, 83% of it comes from funders outside California, across 23 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $4.3M arriving through sponsors registered in 16 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
MYOTONIC DYSTROPHY FOUNDATION INC holds deeper cash reserves than three-quarters of the 8,126 health nonprofits its size.
this organization peer median middle 50% of peers· 8,126 health nonprofits $1M–$10M, FY2024
Organizations like MYOTONIC DYSTROPHY FOUNDATION INC
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In California
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
88% of spending goes to programs.
Governance
Public support
93%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 1 state
Part of a family of 1 related entity
- Mdf UK · exempt
Screen this organization
A dated, signed PDF of the compliance screen for MYOTONIC DYSTROPHY FOUNDATION INC: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds MYOTONIC DYSTROPHY FOUNDATION INC?
- MYOTONIC DYSTROPHY FOUNDATION INC (California) receives grants from 84 organizations whose IRS filings report $5,818,048 to it, the largest being NETWORK FOR GOOD ($1,573,142). 51 of them have funded it in more than one year, and 75% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does MYOTONIC DYSTROPHY FOUNDATION INC have?
- IRS filings report 84 organizations giving $5,818,048 in grants to MYOTONIC DYSTROPHY FOUNDATION INC, 51 of which have funded it in more than one year.
- Who is the largest funder of MYOTONIC DYSTROPHY FOUNDATION INC?
- NETWORK FOR GOOD is the largest funder on record, with $1,573,142 in grants. The full list of funders is on this page.
- How can an organization like MYOTONIC DYSTROPHY FOUNDATION INC find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in California. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2024 (financials across 2017–2024), and the filings of 84 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing