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Amyotrophic Lateral Sclerosis Assn
Amyotrophic Lateral Sclerosis Assn reported $68.6 million in revenue and $82.2 million in expenses for the fiscal year ending January 31, 2025. Of every $100 it spent, $68.68 went to program services, $8.25 to management and general costs and $23.07 to fundraising. Its largest source of revenue was contributions and grants: 96.0% of the total. Government grants made up 14.9%. The highest compensation it reported for one person was $546,268 (PRESIDENT AND CEO). 85 people received more than $100,000 in reportable compensation. Revenue rose 85% between FY2020 and FY2025. Source: Form 990, FY2025 (5 mo.).
Where $100 of spending went
The 5-month short period ending June 30, 2025 · Form 990, Part IX, line 25 · total expenses $82MFor context, the median across 314 covered diseases, disorders & medical disciplines charities: $88.73 programs, $10.89 management, $0.38 fundraising (medians computed separately, so they may not sum to $100).
Where $100 of revenue came from
The 5-month short period ending June 30, 2025 · Form 990, Part VIII · total revenue $69MThe 990 scorecard · same measures for every charity, no grades
| Measure | FY2025 | Median |
|---|---|---|
| Program services Part IX 25(B) ÷ 25(A) | 68.7% | 86.7% |
| Management & general Part IX 25(C) ÷ 25(A) | 8.2% | 10.6% |
| Fundraising Part IX 25(D) ÷ 25(A) | 23.1% | 0.4% |
| Fundraising cost per $1 of contributions Part IX 25(D) ÷ Part VIII 1h | $0.29 | $0.03 |
| Contributions & grants share of revenue Part VIII 1h ÷ 12 | 96.0% | 24.7% |
| Government grants share of revenue Part VIII 1e ÷ 12 | 14.9% | 0.6% |
| Program service revenue share Part VIII 2g ÷ 12 | 0.0% | 59.5% |
| Highest reported compensation Part VII-A, columns D–F | $546,268 | $391,657 |
| Highest compensation as share of expenses Part VII-A ÷ Part IX 25(A) | 0.66% | 1.45% |
| People paid over $100,000 Part VII, line 2 | 85 | 10 |
| Net assets, in months of expenses Part X 33(B) ÷ monthly expenses | 13.0 | 7.6 |
| Independent voting board members Part VI 1a–1b | 25 of 25 | 100.0% |
A median is context, not a target: hospitals, universities, food banks and grantmakers spend in very different ways. What these measures can and can't tell you.
What the money paid for, in its own words
FY2025 (5 mo.) · Form 990, Part III · the three largest programs by expensePatient and community services: the association is committed to providing fully developed, managed and evaluated programs and services to people living with als, families, caregivers and professionals across the united states. Programs incorporate the perspectives from key stakeholders including people living with the disease, subject matter experts, clinical best practice, caregivers, technology, academicians and research. Activities address current needs and explore future services, creating a foundation for innovative and advanced program development based on specific community needs and…
The als association develops awareness and understanding of als and the work of the association among the general public, healthcare professionals, the scientific community and elected and other government officials. The als association's advocacy efforts help secure federal and state funding in support of als research and support for people living with als. The advocacy efforts include advances in legislation to help those living with als navigate insurance and other government programs
Highest reported compensation
FY2025 (5 mo.) · Form 990, Part VII, Section A · roles as filed; names are in the filing, not here| Role | From this org | From related orgs | Other | Total |
|---|---|---|---|---|
| PRESIDENT AND CEO Officer, 37.50 hrs/week | $491,499 | $0 | $54,769 | $546,268 |
| CHIEF DEVELOPMENT OFFICER Key employee, 37.50 hrs/week | $270,892 | $0 | $81,038 | $351,930 |
| CHIEF FINANCIAL OFFICER Officer, 37.50 hrs/week | $288,086 | $0 | $35,917 | $324,003 |
| SENIOR VICE PRESIDENT RESEARCH Highest compensated employee, 37.50 hrs/week | $232,488 | $0 | $75,573 | $308,061 |
| SVP STRATEGIC ALLIANCES & GOVERNANCE Highest compensated employee, 37.50 hrs/week | $245,671 | $0 | $46,889 | $292,560 |
| CHIEF INFORMATION & TECHNOLOGY OFFICER Key employee, 37.50 hrs/week | $264,616 | $0 | $26,338 | $290,954 |
| CHIEF COMMUNITY ENGAGEMENT OFFICER Key employee, 37.50 hrs/week | $244,313 | $0 | $31,456 | $275,769 |
| CHIEF MARKETING & COMMUNICATIONS OFFICER Key employee, 37.50 hrs/week | $250,253 | $0 | $15,417 | $265,670 |
85 people received more than $100,000 in reportable compensation from Amyotrophic Lateral Sclerosis Assn (Part VII, line 2). Compensation of current officers, directors and key employees totaled $2.5M (Part IX, line 5).
7 filings since FY2020
Form 990, Parts I, VII, IX and X · each row is that year's own filing, linkedGovernance answers, as filed
FY2025 (5 mo.) · the organization's own yes/no answers; explanations, if any, are in Schedule O of the filing · what each means- Voting board members, and how many are independent Part VI, lines 1a–1b25 · 25 independent
- Audited financial statements Part XII 2bYes
- Conflict-of-interest policy Part VI 12aYes
- Whistleblower policy Part VI 13Yes
- Document retention policy Part VI 14Yes
- Independent process for top executive pay Part VI 15aYes
- Board given the 990 before filing Part VI 11aYes
- Family or business ties among insiders Part VI 2No
- Aware of a significant diversion of assets Part VI 5No
- Excess benefit transaction with an insider Part IV 25aNo
- Loans to or from insiders outstanding Part IV 26No
- Lobbying, or a 501(h) election in effect Part IV 4Yes
- Over $15,000 of professional fundraising services Part IV 18Yes
- Over $10,000 of activity outside the U.S. Part IV 14bYes
- Employees Part I, line 5528
- Volunteers Part I, line 625
Largest outside contractors
FY2025 (5 mo.) · Form 990, Part VII, Section B · businesses only| A NEW DIRECTION INC Supportive care | $684,166 |
| BARNES & THORNBURG LLP Attorney (legal services) | $368,718 |
| YES& HOLDINGS LLC Professional services it | $210,300 |
| BEACON HILL SOLUTIONS GROUP LLC Temporary help | $202,964 |
| FAEGRE DRINKER BIDDLE & REATH LLP Lobbying consulting | $195,300 |
Individuals listed as contractors are left out. 20 contractors were paid more than $100,000 in all.
Private foundation grants it received
301 private foundations reported grants to Amyotrophic Lateral Sclerosis Assn totaling $2.3M on their tax year 2023 Form 990-PF returns. See which foundations, on WHOFUNDS.
Source: WHOFUNDS open grant graph, matched from Form 990-PF Part XV.
Correct a figure or respond
Every number above is copied from Amyotrophic Lateral Sclerosis Assn's own Form 990. If one doesn't match the filing, that's our error and we'll fix it. If you work for Amyotrophic Lateral Sclerosis Assn, you can publish a response that is linked from this page.
Share or embed this breakdown
Of every $100 Amyotrophic Lateral Sclerosis Assn spent in FY2025, $68.68 went to programs. The full breakdown, from its IRS Form 990:
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Questions people ask
How much of Amyotrophic Lateral Sclerosis Assn's spending goes to programs?
In the fiscal year ending January 31, 2025, Amyotrophic Lateral Sclerosis Assn reported that 68.7% of its $82.2 million in expenses went to program services, 8.2% to management and general and 23.1% to fundraising (Form 990, Part IX).
How much does Amyotrophic Lateral Sclerosis Assn pay its top executive?
The largest total compensation Amyotrophic Lateral Sclerosis Assn reported for one person in the fiscal year ending January 31, 2025 was $546,268, for the role of PRESIDENT AND CEO (Form 990, Part VII, including compensation from related organizations and other compensation).
Where does Amyotrophic Lateral Sclerosis Assn get its money?
Of $68.6 million in revenue in the fiscal year ending January 31, 2025, 96.0% came from contributions and grants (including 14.9% from government grants) and 0.0% from program service revenue (Form 990, Part VIII).
Is Amyotrophic Lateral Sclerosis Assn a registered charity?
The IRS lists EIN 13-3271855 as a 501(c)(3) organization (publicly supported organization (170(b)(1)(a)(vi))), and its records show contributions as tax-deductible. Form 990 filings on record here cover tax years 2019, 2020, 2021, 2022, 2023, 2024. A filing shows what the organization reported; it doesn't by itself show whether a program works.
Sources
- FY2025 (5 mo.): Form 990 for the 5-month short period ending June 30, 2025, object 202621349349307277 · read the filing
- FY2025: Form 990 for the fiscal year ending January 31, 2025, object 202543459349301414 · read the filing
- FY2024: Form 990 for the fiscal year ending January 31, 2024, object 202413489349301366 · read the filing
- FY2023: Form 990 for the fiscal year ending January 31, 2023, object 202303479349300530 · read the filing
- FY2022: Form 990 for the fiscal year ending January 31, 2022, object 202222139349300732 · read the filing
- FY2021: Form 990 for the fiscal year ending January 31, 2021, object 202141669349301914 · read the filing
- FY2020: Form 990 for the fiscal year ending January 31, 2020, object 202041719349300104 · read the filing
All filings for EIN 13-3271855: ProPublica Nonprofit Explorer · IRS Tax Exempt Organization Search. Figures are as the organization reported them; we have not audited them.