Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in Mar 2007.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
88 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
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Who runs it and what they're paid
16 people listed on the 990; $704K paid to officers and key staff.
Tanya Stevenson’s $248K as CEO is at the 86th percentile of top reported officer pay among 733 $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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Questions the 990 asks
The form asks each of these directly. These are the filed answers.
- Family or business ties among officersPt VI · Ln 2No
- Top official's pay set by an independent reviewPt VI · Ln 15aYes
Programs and updates
Fund research, educate, and advocate for effective treatments and a cure for myotonic dystrophy.
Questions for Myotonic Dystrophy Foundation INC
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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.
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2024 990, line by line.
Download 990
| Line | Start FY24 | End FY24 |
|---|---|---|
| Cash and savingsLn 1–2 | $5.1M | $5.6M |
| InvestmentsLn 11–13 | $47K | $0 |
| Land, buildings, equipmentLn 10c | $0 | |
| Total assetsLn 16 | $5.5M | $5.8M |
| LiabilitiesLn 26 | $1.5M | $1.9M |
| Net assetsLn 32 | $4.0M | $3.9M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $850K | $850K | ||
| Grants to domestic individualsLn 2 | $0 | |||
| Grants and assistance to foreign recipientsLn 3 | $158K | $158K | ||
| Benefits paid to or for membersLn 4 | $0 | |||
| Pay of current officers, directors and key staffLn 5 | $257K | $209K | $11K | $37K |
| Pay of disqualified personsLn 6 | $0 | |||
| Other salaries and wagesLn 7 | $1.1M | $922K | $49K | $166K |
| Pension plan contributionsLn 8 | $0 | |||
| Other employee benefitsLn 9 | $79K | $64K | $3K | $11K |
| Payroll taxesLn 10 | $100K | $81K | $4K | $15K |
| Management feesLn 11a | $0 | |||
| Legal feesLn 11b | $0 | |||
| Accounting feesLn 11c | $17K | $13K | $3K | $1K |
| Lobbying feesLn 11d | $0 | |||
| Professional fundraising feesLn 11e | $0 | |||
| Investment management feesLn 11f | $0 | |||
| Other fees for servicesLn 11g | $304K | $236K | $65K | $2K |
| Advertising and promotionLn 12 | $0 | |||
| Office expensesLn 13 | $0 | |||
| Information technologyLn 14 | $28K | $21K | $5K | $2K |
| RoyaltiesLn 15 | $0 | |||
| OccupancyLn 16 | $34K | $29K | $203 | $4K |
| TravelLn 17 | $0 | |||
| Travel and entertainment for public officialsLn 18 | $0 | |||
| Conferences, conventions and meetingsLn 19 | $551K | $510K | $28K | $13K |
| InterestLn 20 | $0 | |||
| Payments to affiliatesLn 21 | $0 | |||
| Depreciation, depletion and amortizationLn 22 | $0 | |||
| InsuranceLn 23 | $5K | $3K | $580 | $656 |
| Other expenses (24a–d)Ln 24 | $235K | $197K | $34K | $4K |
| All other expensesLn 24e | $0 | |||
| Total functional expensesLn 25 | $3.8M | $3.3M | $204K | $256K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest Viewing | $3.7M | $3.8M | −$94K | $3.9M | 990 PDF |
| FY2023 | $2.4M | $3.8M | −$1.3M | $4.0M | 990 PDF |
| FY2022 | $2.8M | $2.5M | $268K | $5.3M | 990 PDF |
| FY2021 | $2.4M | $1.5M | $893K | $5.1M | 990 PDF |
| FY2020 | $1.9M | $1.1M | $823K | $4.2M | 990 PDF |
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Schedules filed Part IV
See the full FY2024 990 (6 parts)
Part I · Summary $3,659,795 revenue, 12 lines filed
Part VI · Governance 12 of 12 board members independent, no flags
Part VIII · Statement of revenue $3,659,795 across 11 lines filed
Part IX · Statement of functional expenses $3,754,033 across 31 lines filed
Part X · Balance sheet $5,826,049 assets, 21 lines filed
Part XI · Reconciliation of net assets $3,908,143 net assets at year end
Form 990 e-file (XML) FY2024 from the IRS · Classification, formation year and address from the IRS Business Master File
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