Cure Sanfilippo Foundation
Nonprofit profile at a glance
- EIN
- 464322131
- IRS 990 coverage
- 2014–2024
- Forms available
- Form 990 2024, Form 990-EZ 2013
- Location
- Columbia, SC, USA
- Phone
- 8034130525
- Rating
- 71
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Specifically Named Diseases Research
Reported finances
- Revenue
- $2,781,149
- Expenses
- $1,572,959
- Assets
- $13,871,255
- Liabilities
- $135,072
Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
10 people listed
Executive titles in this filing
- Katie Walton (Vice President)
Highest reported compensation
- Glenn O'Neill (Exe Dir/Pres): $161,106 total reported compensation
- Cara O'Neill (Chief Science): $146,196 total reported compensation
- Katie Walton (Vice President): $122,727 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 accelerate scientific development and access to a cure or therapeutic options for all affected by Sanfilippo syndrome, drive advocacy to improve care and outcomes, and empower families with information, guidance, and support to navigate the journey.
Operating model
- Revenue model
- Donor-supported. 86% of the money available for current operations came from contributions and gifts.
- Distribution model
- Hybrid. The nonprofit split its reported program spending across 49% for direct work, and 51% for grants.
The verdict
SUPPORTED - A large share of total spending goes to programs and most voting board members are independent. A relatively small share of available resources goes toward mission work and few specific pay-setting methods are documented in the filing; unanswered boxes are not proof of absence.
Rating breakdown
- Financial Efficiency: 63
- Transparency & Controls: 57
- Accountability: 100
- Sustainability: 80
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 56.3%; rating input score 56
- Program expense ratio: 80.1%; rating input score 80
- Fundraising efficiency: $15.18 raised per $1 spent on fundraising; rating input score 51; 51st percentile among comparable filings
Transparency & Controls
- Consistency checks: 93.3%; rating input score 93; 17th percentile among comparable filings
- Pay-setting controls: 0 of 6 controls in place; rating input score 0
- Compensation committee: Missing
- Independent consultant: Missing
- Other Form 990s reviewed: Missing
- Written employment contract: Missing
- Compensation survey or study: Missing
- Board or committee approval: Missing
- Foreign activity oversight: 0 of 8 controls in place; rating input score 0
- Claims monitoring procedures: Fail
- Requires narrative reports: Fail
- Conducts field audits: Fail
- May suspend future funding: Fail
- Requires financial reports: Fail
- Conducts site visits: Fail
- Requires grant agreements: Fail
- May require repayment: Fail
- Grant itemization coverage: 100%; rating input score 100; 72nd 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: 43.4%; rating input score 90; 90th percentile among comparable filings
- Total-asset coverage ratio: 8.82; rating input score 90; 90th percentile among comparable filings
- Liabilities to assets ratio: 0.01; rating input score 86; 86th percentile among comparable filings
- Officer compensation ratio: 27.3%; rating input score 7; 7th percentile among comparable filings
Growth
- Program expense growth: 14.2% per year; rating input score 100; 76th percentile among comparable filings
- Revenue growth: 6.8% per year; rating input score 100; 53rd percentile among comparable filings
- Asset growth: 12.6% per year; rating input score 100; 68th percentile among comparable filings
Details
- Where the money goes: 56.3% of revenue deployed · 80.1% of spending went to programs
- Governance: 7 of 7 board members independent · 9 of 9 filing controls reported
- Programs: 1 filed program accomplishment · $1.3M in reported program spending
- Leadership: top reported pay $161K · 10 people listed · 0 of 6 pay-setting controls reported
- Consistency: 33 of 34 current checks pass · 1 finding to review
- Schedules: 9 filed schedules · includes major donors, foreign activity, grants, and executive pay
- Filing history: 9 filing years from 2014 to 2024
- Contacts: How to reach this organization
- Money network: 7 filed money-flow records
- Related organizations: 5 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.
- Review — Financial Efficiency: Mission deployment rate scored 56/100.
- High — Transparency & Controls: Pay-setting controls scored 0/100.
- High — Transparency & Controls: Foreign activity oversight: 8 of 8 not reported.
- Review — Financial Efficiency: Fundraising efficiency scored 51/100.
- High — Sustainability: Officer compensation ratio scored 7/100.
- Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.