The Styrke Foundation for Rare Disease Research and Treatment
Nonprofit profile at a glance
- EIN
- 931503591
- IRS 990 coverage
- 2024–2024
- Official website data refreshed
- Sep 2026
- Forms available
- Form 990 2024, Form 990-N 2023
- Location
- Darien, CT, USA
- Phone
- 9177970233
- Rating
- 46
- Verdict
- MIXED
- Rating confidence
- Moderate
- Sector
- Public Foundations
Reported finances
- Revenue
- $1,804,272
- Expenses
- $50,531
- Assets
- $1,753,741
- Liabilities
- $0
Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
1 person listed
Executive titles in this filing
- Anne Yang-Dwyer (President)
People named in this filing
- Anne Yang-Dwyer (President)
Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.
Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
The Styrke Foundation’s mission is to create a world where children affected by rare genetic haematological diseases can live fulfilling lives without limitations.
What it reported doing in 2024
To engage in charitable activities that support and develop therapeutic treatments and/or cures that will improve lives and transform the health of individuals living with orphan diseases.
Operating model
- Revenue model
- Donor-supported. 100% of the money available for current operations came from contributions and gifts.
- Distribution model
- Grant intermediary. The nonprofit sent 100% of its reported program spending out as grants.
The verdict
MIXED - The filed numbers largely add up and revenue comfortably covers expenses. A relatively small share of available resources goes toward mission work and a relatively small share of voting board members are independent.
Rating breakdown
- Financial Efficiency: 20
- Transparency & Controls: 94
- Accountability: 24
- Sustainability: 96
- Growth: NotEnoughData
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 1.8%; rating input score 2
- Program expense ratio: 57.2%; rating input score 57
- Fundraising efficiency: Limited
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
- Pay-setting controls: Limited
- Foreign activity oversight: Limited
- Grant itemization coverage: 100%; rating input score 100; 76th percentile among comparable filings
- Major donor itemization: Yes; rating input score 100
- Related-party transparency: Limited
Accountability
- Independent voting board: 0%; rating input score 0; 5th percentile among comparable filings
- Governance controls: 4 of 7 controls in place; rating input score 57
- Conflict-of-interest policy: Fail
- Whistleblower policy: Fail
- Document-retention policy: Fail
- CEO compensation review process: NotApplicable
- Other executive compensation review process: NotApplicable
- Form 990 shared with the board: Pass
- Board meeting minutes documented: Pass
- Audit committee oversight: Pass
- Independent financial-statement audit: Pass
Sustainability
- Operating margin: 97.2%; rating input score 99; 99th percentile among comparable filings
- Total-asset coverage ratio: 34.71; rating input score 98; 98th percentile among comparable filings
- Liabilities to assets ratio: 0; rating input score 91; 91st percentile among comparable filings
- Officer compensation ratio: 0%; rating input score 81; 81st percentile among comparable filings
Growth
- Program expense growth: Limited
- Revenue growth: Limited
- Asset growth: Limited
Details
- What they do: 7 programs and campaigns described on the official site · 1 operating location identified
- Where the money goes: 1.8% of revenue deployed · 57.2% of spending went to programs
- Governance: 0 of 1 board members independent · 4 of 7 filing controls reported
- Programs: 1 filed program accomplishment · $29K in reported program spending
- Leadership: top reported pay $0 · 1 people listed
- Consistency: 17 of 17 current checks pass
- Schedules: 5 filed schedules · includes major donors and grants
- Contacts: How to reach this organization
- Money network: 1 filed money-flow record
- 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.
Key Signals
Signals prioritize questions for review. They are not findings of misconduct.
- High — Financial Efficiency: Mission deployment rate scored 2/100.
- High — Accountability: Independent voting board scored 0/100.
- Review — Financial Efficiency: Program expense ratio scored 57/100.
- Review — Accountability: Governance controls: 3 of 7 not reported.