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
69 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
8 people listed on the 990; $110K 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.
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Newborn Screening
Since 2017 Firefly has been leading the NPC NBS Initiative with a vision that all newborns will be screened for NPC, enabling early diagnosis and intervention. The Initiative is led by a broad stakeholder working group, chaired by Drs. Elizabeth Berry-Kravis of RUSH and Dr.
Patient Access Fund
Firefly Fund works 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.
Medical Research
Supporting research that could provide novel 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 FY2020 990, line by line.
Download 990
| Line | Start FY20 | End FY20 |
|---|---|---|
| Cash and savingsLn 1–2 | $178K | $240K |
| Total assetsLn 16 | $178K | $261K |
| LiabilitiesLn 26 | $0 | $21K |
| Net assetsLn 32 | $178K | $240K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $0 | $0 | ||
| Grants to domestic individualsLn 2 | $0 | $0 | ||
| Grants and assistance to foreign recipientsLn 3 | $0 | $0 | ||
| Benefits paid to or for membersLn 4 | $0 | $0 | ||
| Pay of current officers, directors and key staffLn 5 | $110K | $66K | $22K | $22K |
| Pay of disqualified personsLn 6 | $0 | |||
| Payroll taxesLn 10 | $10K | $10K | ||
| Management feesLn 11a | $0 | $0 | $0 | $0 |
| Legal feesLn 11b | $0 | $0 | $0 | $0 |
| Accounting feesLn 11c | $3K | $2K | $390 | $584 |
| Lobbying feesLn 11d | $0 | $0 | $0 | $0 |
| Professional fundraising feesLn 11e | $1K | $1K | ||
| Investment management feesLn 11f | $0 | $0 | $0 | $0 |
| Other fees for servicesLn 11g | $21K | $0 | $21K | |
| Advertising and promotionLn 12 | $74K | $0 | $74K | |
| Office expensesLn 13 | $243K | $243K | ||
| Information technologyLn 14 | $627 | $501 | $126 | |
| TravelLn 17 | $8K | $6K | $1K | $2K |
| InsuranceLn 23 | $550 | $386 | $66 | $98 |
| Total functional expensesLn 25 | $472K | $328K | $45K | $100K |
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 | $554K | $342K | $212K | $463K | 990 PDF |
| FY2020 Viewing | $534K | $472K | $62K | $240K | 990 PDF |
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Schedules filed Part IV
See the full FY2020 990 (6 parts)
Part I · Summary $534,468 revenue, 12 lines filed
Part VI · Governance 5 of 7 board members independent, 3 to look at
Part VIII · Statement of revenue $534,468 across 14 lines filed
Part IX · Statement of functional expenses $472,285 across 19 lines filed
Part X · Balance sheet $261,346 assets, 14 lines filed
Part XI · Reconciliation of net assets $239,978 net assets at year end
Form 990 e-file (XML) FY2020 from the IRS · Classification, formation year and address from the IRS Business Master File
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