California · Nonprofit
Association for Creatine Deficiencies
Association for Creatine Deficiencies (California) receives grants from 17 organizations whose IRS filings report $980,254 to it, the largest being Silicon Valley Community Foundation ($615,000). 11 of them have funded it in more than one year, and 97% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2024
- $411k
- Funders on record
- 17
- Grants received
- $980k
- Net assets
- $408k
What Association for Creatine Deficiencies does
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).
As stated on its FY2024 Form 990.
Program
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.
$535,706 spentof which $215,440 as grants$47,133 earned by the program100% of program spending
The program described on its FY2024 Form 990. Program spending in total: $535,706.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2019 to 2020, from $165k to $714k (+332%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
86% of Association for Creatine Deficiencies’s revenue is contributions — more donation-reliant than the typical peer (83% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 3 of the last 8 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Heidi Wallis
Executive Director
Board chair
Daniel Coller
Board Chair
As listed on its FY2024 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 2 funders to 11 funders, grant income rose $7k → $83k.
8 of 17 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 97% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of Association for Creatine Deficiencies’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
Association for Creatine Deficiencies leans on a few funders — its largest provides 63% of grant income and the top three 86%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
97% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund Association for Creatine Deficiencies.
Largest funder’s share by year: 2017 96% · 2019 45% · 2020 94% · 2021 69% · 2022 77% · 2023 30% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
43% of Association for Creatine Deficiencies's funders are still giving 3 years after their first grant; 65% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
97% of Association for Creatine Deficiencies's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $27k that is directly attributable, 56% of it comes from California funders.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $953k arriving through sponsors registered in 7 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
Association for Creatine Deficiencies has grown faster than three-quarters of the 13,769 health nonprofits its size.
this organization peer median middle 50% of peers· 13,769 health nonprofits $100k–$1M, FY2024
Government funding Association for Creatine Deficiencies receives
Grants and contracts to this organization from federal (USASpending) and state checkbooks, reconciled to its EIN. $20k on record.
- Department of Health and Human Services$20k
Federal grants vs contracts are distinguished; state line items keep their reported category. Matched by name + geography (the BMF), so coverage is partial and precision-first.
Organizations like Association for Creatine Deficiencies
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In California
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
82% of spending goes to programs.
Governance
Public support
98%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Screen this organization
A dated, signed PDF of the compliance screen for Association for Creatine Deficiencies: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds Association for Creatine Deficiencies?
- Association for Creatine Deficiencies (California) receives grants from 17 organizations whose IRS filings report $980,254 to it, the largest being Silicon Valley Community Foundation ($615,000). 11 of them have funded it in more than one year, and 97% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does Association for Creatine Deficiencies have?
- IRS filings report 17 organizations giving $980,254 in grants to Association for Creatine Deficiencies, 11 of which have funded it in more than one year.
- Who is the largest funder of Association for Creatine Deficiencies?
- Silicon Valley Community Foundation is the largest funder on record, with $615,000 in grants. The full list of funders is on this page.
- How can an organization like Association for Creatine Deficiencies find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in California. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2024 (financials across 2017–2024), and the filings of 17 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing