Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in Mar 2017.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
87 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; $95K paid to officers and key staff.
Beryl Pam Andrews’s $95K as Executive Director is at the 75th 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 · 2 named individuals · Part VII
| Name | FY2024 | FY2023 | FY2022 | FY2021 | FY2020 |
|---|---|---|---|---|---|
| Beryl Pamela Andrews | — | $122,071 | $95,000 | — | — |
| Beryl Pam Andrews | $95,000 | — | — | $95,000 | $110,120 |
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 2Yes
- Top official's pay set by an independent reviewPt VI · Ln 15aYes
- Loans to or from officersSch L · Pt II1 listed
Programs and updates
Advocates for newborn screening, funds medical research, and improves patient access to care.
Questions for Andrews Firefly Fund
Your first name shows with your question. Andrews Firefly Fund answers here, for everyone.
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Since 2017 firefly fund has been leading the NPC NBS initiative with a vision that all newborns will be screened for NPC, enabeling early diagnosis and intervention. The initiative is led by a broad stakeholder working group, chaired by DRS.
Work with academic centers of excellence and patient advocacy organizations to remove barriers to care and access to therapies necessary for their loved ones with an NPC diagnosis.
Firefly fund supports medical research that could provide therapeutics for the treatment of niemann pick type c disease.
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2021 990, line by line.
Download 990
| Line | Start FY21 | End FY21 |
|---|---|---|
| Cash and savingsLn 1–2 | $240K | $419K |
| Total assetsLn 16 | $261K | $466K |
| LiabilitiesLn 26 | $21K | $3K |
| Net assetsLn 32 | $240K | $463K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $185K | $185K | ||
| Pay of current officers, directors and key staffLn 5 | $95K | $76K | $10K | $9K |
| Payroll taxesLn 10 | $7K | $6K | $727 | $726 |
| Accounting feesLn 11c | $3K | $3K | $329 | $329 |
| Other fees for servicesLn 11g | $20K | $20K | ||
| Office expensesLn 13 | $25K | $24K | $677 | $332 |
| TravelLn 17 | $4K | $3K | $418 | $417 |
| InsuranceLn 23 | $570 | $474 | $48 | $48 |
| Other expenses (24a–d)Ln 24 | $2K | $2K | ||
| Total functional expensesLn 25 | $342K | $297K | $33K | $11K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest | $649K | $737K | −$88K | $12K | 990 PDF |
| FY2023 | $55K | $100K | 990 PDF | ||
| FY2022 | $38K | $292K | 990 PDF | ||
| FY2021 Viewing | $554K | $342K | $212K | $463K | 990 PDF |
| FY2020 | $534K | $472K | $62K | $240K | 990 PDF |
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Schedules filed Part IV
See the full FY2021 990 (6 parts)
Part I · Summary $553,765 revenue, 12 lines filed
Part VI · Governance 4 of 6 board members independent, 3 to look at
Part VIII · Statement of revenue $553,765 across 5 lines filed
Part IX · Statement of functional expenses $342,210 across 9 lines filed
Part X · Balance sheet $465,686 assets, 8 lines filed
Part XI · Reconciliation of net assets $463,171 net assets at year end
Form 990 e-file (XML) FY2021 from the IRS · Classification, formation year and address from the IRS Business Master File
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