Myotonic Dystrophy Foundation Inc
Nonprofit profile at a glance
- EIN
- 205014628
- IRS 990 coverage
- 2011–2024
- Forms available
- Form 990 2024
- Location
- Oakland, CA, USA
- Phone
- 4158007745
- Rating
- 82
- Verdict
- STRONG
- Rating confidence
- Standard
- Sector
- Diseases of Specific Organs
Reported finances
- Revenue
- $3,659,795
- Expenses
- $3,754,033
- Assets
- $5,826,049
- Liabilities
- $1,917,906
Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
16 people listed
Executive titles in this filing
- TANYA STEVENSON (CEO)
Highest reported compensation
- TANYA STEVENSON (CEO): $257,057 total reported compensation
- ANDREAS ROHRWASSER (CHIEF SCI. OFFICER): $205,555 total reported compensation
- KLEED CUMMING (COMM/TECH MANAGER): $136,667 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.
What it reported doing in 2024
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.
Operating model
- Revenue model
- Donor-supported. 82% of the money available for current operations came from contributions and gifts.
- Distribution model
- Hybrid. The nonprofit split its reported program spending across 69% for direct work, and 31% for grants.
The verdict
STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing reports few safeguards for money sent abroad and fundraising costs are high for each dollar raised.
Rating breakdown
- Financial Efficiency: 85
- Transparency & Controls: 72
- Accountability: 100
- Sustainability: 33
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 90.5%; rating input score 91
- Program expense ratio: 87.7%; rating input score 88
- Fundraising efficiency: $14.19 raised per $1 spent on fundraising; rating input score 49; 49th percentile among comparable filings
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
- Pay-setting controls: 1 of 6 controls in place; rating input score 17
- Compensation committee: Missing
- Independent consultant: Missing
- Other Form 990s reviewed: Missing
- Written employment contract: Missing
- Compensation survey or study: Missing
- Board or committee approval: Pass
- Foreign activity oversight: 3 of 8 controls in place; rating input score 38
- Claims monitoring procedures: Pass
- Requires narrative reports: Pass
- Conducts field audits: Fail
- May suspend future funding: Fail
- Requires financial reports: Pass
- Conducts site visits: Fail
- Requires grant agreements: Fail
- May require repayment: Fail
- Grant itemization coverage: 99.9%; rating input score 100; 42nd percentile among comparable filings
- Major donor itemization: Yes; rating input score 100
- Related-party transparency: Limited
Accountability
- Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
- Governance controls: 9 of 9 controls in place; rating input score 100
- Conflict-of-interest policy: Pass
- Whistleblower policy: Pass
- Document-retention policy: Pass
- CEO compensation review process: Pass
- Other executive compensation review process: Pass
- Form 990 shared with the board: Pass
- Board meeting minutes documented: Pass
- Audit committee oversight: Pass
- Independent financial-statement audit: Pass
Sustainability
- Operating margin: -2.6%; rating input score 25; 25th percentile among comparable filings
- Total-asset coverage ratio: 1.55; rating input score 53; 53rd percentile among comparable filings
- Liabilities to assets ratio: 0.33; rating input score 32; 32nd percentile among comparable filings
- Officer compensation ratio: 19.3%; rating input score 13; 13th percentile among comparable filings
Growth
- Program expense growth: 10.7% per year; rating input score 100; 66th percentile among comparable filings
- Revenue growth: 7.1% per year; rating input score 100; 55th percentile among comparable filings
- Asset growth: 10.9% per year; rating input score 100; 62nd percentile among comparable filings
Details
- Where the money goes: 90.5% of revenue deployed · 87.7% of spending went to programs
- Governance: 12 of 12 board members independent · 9 of 9 filing controls reported
- Programs: 3 filed program accomplishments · $3.3M in reported program spending
- Leadership: top reported pay $257K · 16 people listed · 1 of 6 pay-setting controls reported
- Consistency: 32 of 32 current checks pass
- Schedules: 9 filed schedules · includes major donors, foreign activity, grants, and executive pay
- Filing history: 14 filing years from 2011 to 2024
- Contacts: How to reach this organization
- Money network: 13 filed money-flow records
- Related organizations: 9 filed related-organization links
- Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
- People: Everyone the filings name, and which of them the filings identify by more than a name.
- Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.
Key Signals
Signals prioritize questions for review. They are not findings of misconduct.
- Moderate — Transparency & Controls: Foreign activity oversight: 5 of 8 not reported.
- Moderate — Financial Efficiency: Fundraising efficiency scored 49/100.
- High — Sustainability: Operating margin scored 25/100.
- Review — Sustainability: Total-asset coverage ratio scored 53/100.
- High — Sustainability: Officer compensation ratio scored 13/100.
- Moderate — Sustainability: Liabilities to assets ratio scored 32/100.