Association for Creatine Deficiencies
Nonprofit profile at a glance
- EIN
- 462133007
- IRS 990 coverage
- 2020–2024
- Forms available
- Form 990 2024, Form 990-EZ 2019, Form 990-N 2014
- Location
- Carlsbad, CA, USA
- Phone
- 6019422373
- Rating
- 79
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Voluntary Health Associations & Medical Disciplines N.E.C.
Reported finances
- Revenue
- $411,288
- Expenses
- $653,844
- Assets
- $418,617
- Liabilities
- $10,372
Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
7 people listed
Executive titles in this filing
- Heidi Wallis (Executive Director)
Highest reported compensation
- Heidi Wallis (Executive Director): $109,716 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 promote and fund medial research for treatments and cures, provide patient, family, and public education, and advocate for early intervention through newborn screening for Cerebral Creatine Deficiency Syndromes (CCDS).
What it reported doing in 2024
Providing accurate and up to date information through attendance at Medical & Scientific conferences, maintaining informational website, hosting CCDS conference and distributing recordings of talks to accelerate knowledge of creatine deficiencies and related research. Advocating for increased adoption of newborn screening. Supporting CCDS caregivers with webinars, opportunities to engage with researchers, and a structured virtual support group. Supporting research through fellowship grants and maintenance of a patient registry and natural history platform. Co-supporting research and patient communities through joint webinars, quarterly newsletters, online resources, etc.
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 60% for direct work, and 40% for grants.
The verdict
SUPPORTED - 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 some filing-based governance responses are negative or unanswered.
Rating breakdown
- Financial Efficiency: 87
- Transparency & Controls: 75
- Accountability: 79
- Sustainability: 18
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 100%; rating input score 100
- Program expense ratio: 81.9%; rating input score 82
- Fundraising efficiency: $8.48 raised per $1 spent on fundraising; rating input score 35; 35th percentile among comparable filings
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 64th percentile among comparable filings
- Pay-setting controls: Limited
- 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: 99.8%; rating input score 100; 60th 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: 4 of 8 controls in place; rating input score 50
- Conflict-of-interest policy: Fail
- Whistleblower policy: Fail
- Document-retention policy: Fail
- CEO compensation review process: Fail
- 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: -59%; rating input score 4; 4th percentile among comparable filings
- Total-asset coverage ratio: 0.64; rating input score 30; 30th percentile among comparable filings
- Liabilities to assets ratio: 0.02; rating input score 38; 38th percentile among comparable filings
- Officer compensation ratio: 16.8%; rating input score 22; 22nd percentile among comparable filings
Growth
- Program expense growth: 30.9% per year; rating input score 100; 91st percentile among comparable filings
- Revenue growth: 22% per year; rating input score 100; 89th percentile among comparable filings
- Asset growth: 21.5% per year; rating input score 100; 86th percentile among comparable filings
Details
- Where the money goes: 100% of revenue deployed · 81.9% of spending went to programs
- Governance: 6 of 6 board members independent · 4 of 8 filing controls reported
- Programs: 1 filed program accomplishment · $536K in reported program spending
- Leadership: top reported pay $110K · 7 people listed
- Consistency: 37 of 37 current checks pass
- Schedules: 7 filed schedules · includes major donors, foreign activity, and grants
- Filing history: 4 filing years from 2020 to 2024
- Contacts: How to reach this organization
- Money network: 4 filed money-flow records
- Related organizations: 3 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.
Key Signals
Signals prioritize questions for review. They are not findings of misconduct.
- High — Transparency & Controls: Foreign activity oversight: 8 of 8 not reported.
- Review — Accountability: Governance controls: 4 of 8 not reported.
- Moderate — Financial Efficiency: Fundraising efficiency scored 35/100.
- High — Sustainability: Operating margin scored 4/100.
- Moderate — Sustainability: Total-asset coverage ratio scored 30/100.
- High — Sustainability: Officer compensation ratio scored 22/100.
- Moderate — Sustainability: Liabilities to assets ratio scored 38/100.