Is it real?
Yes. Exemption reinstated (2016-04-15). Per the IRS revocation list. Latest filing on record: FY2025. IRS ruling in Sep 2016.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
93 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
5 people listed on the 990; $52K paid to officers and key staff.
Cassandra Trimnell Ehrlich’s $45K as Executive Director is at the 30th 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 · 5 named individuals · Part VII
| Name | FY2025 | FY2024 | FY2023 | FY2022 | FY2021 | FY2020 |
|---|---|---|---|---|---|---|
| Cassandra Trimnell Ehrlich | $44,535 | $75,332 | $38,800 | $38,800 | $22,200 | $15,000 |
| Shawna Barnes | — | — | — | $38,777 | — | — |
| Stephen Agyenim-Boateng | $1,925 | $20,000 | $26,100 | — | — | — |
| Keith Quirolo | $5,950 | $13,750 | — | — | $5,450 | $1,800 |
| Stephen Agyenim Boateng | — | — | — | — | $12,750 | $6,000 |
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 15aNo
Programs and updates
Educates and provides charitable aid for sickle cell disease.
Questions for Sickle Cell 101
Your first name shows with your question. Sickle Cell 101 answers here, for everyone.
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Education and Empowerment (1) Community educational initiatives
Data Insights and Scientific Collaborations (1) Clinical trials and survey study awareness (2) Collect and report sickle cell community insights
Global Collaborative (1) In-person attendance for congress, symposium etc. (2) Multi-stakeholder virtual collaborations and support
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2025 990, line by line.
Download 990
| Line | Start FY25 | End FY25 |
|---|---|---|
| Cash and savingsLn 1–2 | $137K | |
| Total assetsLn 16 | $0 | $137K |
| LiabilitiesLn 26 | $0 | $0 |
| Net assetsLn 32 | $0 | $137K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic individualsLn 2 | $1K | $1K | ||
| Pay of current officers, directors and key staffLn 5 | $52K | $52K | ||
| Other salaries and wagesLn 7 | $48K | $48K | ||
| Payroll taxesLn 10 | $3K | $3K | ||
| Accounting feesLn 11c | $800 | $800 | ||
| Other fees for servicesLn 11g | $91K | $91K | ||
| Office expensesLn 13 | $17K | $17K | ||
| Information technologyLn 14 | $5K | $5K | ||
| OccupancyLn 16 | $37 | $37 | ||
| TravelLn 17 | $22K | $22K | ||
| Total functional expensesLn 25 | $240K | $222K | $17K | $800 |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest Viewing | $376K | $240K | $137K | $137K | 990 PDF |
| FY2024 | $178K | −$10K | 990 PDF | ||
| FY2023 | $350K | $354K | −$4K | $106K | 990 PDF |
| FY2022 | $247K | $253K | −$6K | $166K | 990 PDF |
| FY2021 | $227K | $195K | $32K | $137K | 990 PDF |
| FY2020 | $78K | $84K | −$6K | $53K | 990 PDF |
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Schedules filed Part IV
See the full FY2025 990 (6 parts)
Part I · Summary $376,327 revenue, 12 lines filed
Part VI · Governance 3 of 5 board members independent, 3 to look at
Part VIII · Statement of revenue $376,327 across 4 lines filed
Part IX · Statement of functional expenses $239,581 across 10 lines filed
Part X · Balance sheet $136,746 assets, 5 lines filed
Part XI · Reconciliation of net assets $136,746 net assets at year end
Form 990 e-file (XML) FY2025 from the IRS · Classification, formation year and address from the IRS Business Master File
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