Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in Jul 2013.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
82 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
7 people listed on the 990; $110K paid to officers and key staff.
Heidi Wallis’s $110K as Executive Director is at the 83rd percentile of top reported officer pay among 901 $100K–1M 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 · 1 named individual · Part VII
| Name | FY2024 | FY2023 | FY2022 |
|---|---|---|---|
| Heidi Wallis | $109,716 | $105,000 | $91,346 |
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 15aNo
Programs and updates
Fund research, educate families, and advocate for newborn screening for rare brain disorders.
Questions for Association for Creatine Deficiencies
Your first name shows with your question. Association for Creatine Deficiencies answers here, for everyone.
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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.
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 | $386K | $244K |
| InvestmentsLn 11–13 | $70K | $77K |
| Land, buildings, equipmentLn 10c | $68K | $45K |
| Total assetsLn 16 | $675K | $419K |
| LiabilitiesLn 26 | $27K | $10K |
| Net assetsLn 32 | $648K | $408K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $117K | $117K | ||
| Grants to domestic individualsLn 2 | $500 | $500 | ||
| Grants and assistance to foreign recipientsLn 3 | $98K | $98K | ||
| Pay of current officers, directors and key staffLn 5 | $110K | $77K | $20K | $13K |
| Other salaries and wagesLn 7 | $40K | $28K | $7K | $5K |
| Other employee benefitsLn 9 | $277 | $176 | $44 | $57 |
| Payroll taxesLn 10 | $12K | $8K | $2K | $1K |
| Legal feesLn 11b | $250 | $250 | ||
| Accounting feesLn 11c | $27K | $27K | ||
| Other fees for servicesLn 11g | $79K | $62K | $12K | $5K |
| Advertising and promotionLn 12 | $15K | $603 | $2K | $12K |
| Office expensesLn 13 | $17K | $10K | $2K | $5K |
| Information technologyLn 14 | $4K | $2K | $2K | $542 |
| OccupancyLn 16 | $1K | $989 | $63 | $88 |
| TravelLn 17 | $13K | $13K | ||
| Conferences, conventions and meetingsLn 19 | $94K | $94K | $152 | |
| Depreciation, depletion and amortizationLn 22 | $23K | $23K | ||
| InsuranceLn 23 | $2K | $132 | $2K | |
| Other expenses (24a–d)Ln 24 | $2K | $2K | ||
| Total functional expensesLn 25 | $654K | $536K | $76K | $42K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest Viewing | $411K | $654K | −$243K | $408K | 990 PDF |
| FY2023 | $588K | $603K | −$14K | $648K | 990 PDF |
| FY2022 | $699K | $600K | $99K | $660K | 990 PDF |
| FY2021 | $322K | $474K | −$152K | $565K | 990 PDF |
| FY2020 | $639K | $96K | $543K | $706K | 990 PDF |
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Schedules filed Part IV
See the full FY2024 990 (6 parts)
Part I · Summary $411,288 revenue, 12 lines filed
Part VI · Governance 6 of 6 board members independent, 4 to look at
Part VIII · Statement of revenue $411,288 across 8 lines filed
Part IX · Statement of functional expenses $653,844 across 19 lines filed
Part X · Balance sheet $418,617 assets, 12 lines filed
Part XI · Reconciliation of net assets $408,245 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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