Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2026. IRS ruling in Apr 2024.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
75 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
14 people listed on the 990.
Dawn Newburg’s $123K as Executive Di is at the 89th percentile of top reported officer pay among 1979 $100K–1M health care 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 | FY2026 | FY2025 |
|---|---|---|
| Dawn Newburg | $123,462 | $110,846 |
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
Supports patients with ALS and their families.
Questions for Amyotrophic Lateral Sclerosis
Your first name shows with your question. Amyotrophic Lateral Sclerosis answers here, for everyone.
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Provide emotional, physical and financial assistance to patients afflicted with neuromuscular disease, and their families.
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 | $494K | $813K |
| Land, buildings, equipmentLn 10c | $42K | $69K |
| Total assetsLn 16 | $538K | $889K |
| LiabilitiesLn 26 | $54K | $77K |
| Net assetsLn 32 | $483K | $813K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Other salaries and wagesLn 7 | $323K | $223K | $32K | $68K |
| Other fees for servicesLn 11g | $20K | $14K | $2K | $4K |
| Advertising and promotionLn 12 | $6K | $4K | $621 | $1K |
| Office expensesLn 13 | $15K | $10K | $2K | $3K |
| OccupancyLn 16 | $30K | $21K | $3K | $6K |
| TravelLn 17 | $888 | $800 | $44 | $44 |
| Payments to affiliatesLn 21 | $54K | $54K | ||
| Depreciation, depletion and amortizationLn 22 | $20K | $20K | ||
| InsuranceLn 23 | $1K | $896 | $131 | $271 |
| Other expenses (24a–d)Ln 24 | $66K | $54K | $1K | $10K |
| All other expensesLn 24e | $2K | $1K | $188 | $398 |
| Total functional expensesLn 25 | $539K | $404K | $41K | $94K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2026 Latest | $733K | $913K | −$180K | $597K | 990 PDF |
| FY2025 | $719K | $994K | −$275K | $776K | 990 PDF |
| FY2024 | Not on file | ||||
| FY2023 | $801K | $861K | −$60K | $881K | 990 PDF |
| FY2022 | $722K | $594K | $128K | $941K | 990 PDF |
| FY2021 Viewing | $868K | $539K | $329K | $813K | 990 PDF |
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Schedules filed Part IV
See the full FY2021 990 (6 parts)
Part I · Summary $868,423 revenue, 12 lines filed
Part VI · Governance 14 of 14 board members independent, 2 to look at
Part VIII · Statement of revenue $868,423 across 7 lines filed
Part IX · Statement of functional expenses $539,273 across 11 lines filed
Part X · Balance sheet $889,401 assets, 13 lines filed
Part XI · Reconciliation of net assets $812,609 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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