Myotonic Dystrophy Foundation INC
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Fund research, educate, and advocate for effective treatments and a cure for myotonic dystrophy. For fiscal year 2024 it reported $3.7M in revenue, $3.8M in expenses, and $3.9M in net assets.Pt I
Summary of the Filing
Where the work happens
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.
Education
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.
Advocacy
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.
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Identity & Classification
Governance & Policies
Officers, Directors & Key Employees
Tanya Stevenson’s $248K as CEO is at the 86th percentile of top reported officer pay among 731 $1–10M diseases & disorders nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 5 named individuals · Part VII
| Name | FY2024 | FY2023 | FY2022 | FY2021 | FY2020 |
|---|---|---|---|---|---|
| Tanya Stevenson | $247,799 | $240,871 | $226,657 | $216,761 | $216,456 |
| Andreas Rohrwasser | $197,755 | — | — | — | — |
| Kleed Cumming | $131,723 | $131,861 | $107,821 | — | $101,656 |
| Mindy Buchanan | $127,061 | $108,620 | — | — | — |
| Catherine Beck | — | $126,798 | — | — | — |
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
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Statement of Revenue
Statement of Functional Expenses
Balance Sheet
Financial Metrics
Same NTEE category, revenue band, and state where available. Descriptive — not a grade.
| Metric | This org | Peer median | Percentile |
|---|---|---|---|
| Program ratio | 88% | — | — |
| Overhead ratio | 5% | — | — |
| Fundraising cost ratio | 7% | — | — |
| Revenue growth | 49% | — | — |
| Investment management fee ratio | 0% | — | — |
| Legal fee ratio | 0% | — | — |
| Accounting fee ratio | 0% | — | — |
| Fundraising fee ratio | 0% | — | — |
Straight from the Form 990 — descriptive, not an evaluation. A ratio is hidden when its base is zero or too small to be meaningful; the dollars are always shown.
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Filings & Schedule Manifest
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Sources
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