Is it real?
Yes. Exemption reinstated (2021-11-15). Per the IRS revocation list. Latest filing on record: FY2025. IRS ruling in Aug 2022.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
72 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
4 people listed on the 990; $169K paid to officers and key staff.
Jennifer Dimartino’s $172K as Executive Director, Clerk is at the 64th percentile of top reported officer pay among 733 $1–10M 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 | FY2025 | FY2024 | FY2023 | FY2022 |
|---|---|---|---|---|
| Jennifer Dimartino | $171,632 | $169,044 | $153,811 | $133,834 |
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 15aYes
Programs and updates
Accelerates ALS treatments and cures, while providing resources and equipment to those affected.
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The organization is a partnership of world leaders in als research and care focused on expediting breakthrough treatments and ultimately a cure for als while providing resources and equipment to those living with the disease now.
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 | $601K | $402K |
| Total assetsLn 16 | $631K | $438K |
| LiabilitiesLn 26 | $0 | $0 |
| Net assetsLn 32 | $631K | $438K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $1.6M | $1.6M | ||
| Pay of current officers, directors and key staffLn 5 | $323K | $32K | $48K | $242K |
| Payroll taxesLn 10 | $27K | $3K | $4K | $20K |
| Office expensesLn 13 | $5K | $463 | $696 | $3K |
| Information technologyLn 14 | $4K | $4K | ||
| TravelLn 17 | $22K | $2K | $3K | $16K |
| InterestLn 20 | $412 | $412 | ||
| InsuranceLn 23 | $31K | $8K | $23K | |
| Other expenses (24a–d)Ln 24 | $330K | $32K | $8K | $289K |
| All other expensesLn 24e | $452 | $452 | ||
| Total functional expensesLn 25 | $2.4M | $1.7M | $78K | $594K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest | $2.3M | $1.6M | $640K | $1.1M | 990 PDF |
| FY2024 Viewing | $2.2M | $2.4M | −$194K | $438K | 990 PDF |
| FY2023 | $2.0M | $1.9M | $163K | $631K | 990 PDF |
| FY2022 | $2.0M | $2.0M | −$25K | $468K | 990 PDF |
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Schedules filed Part IV
See the full FY2024 990 (4 parts)
Part VIII · Statement of revenue $2,177,252 across 4 lines filed
Part IX · Statement of functional expenses $2,371,015 across 10 lines filed
Part X · Balance sheet $437,569 assets, 6 lines filed
Part XI · Reconciliation of net assets $437,569 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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