ALS Therapy Development Foundation
Also known as ALS Therapy Development Institute
ALS Therapy Development Foundation reported $16.1 million in revenue and $13.1 million in expenses for calendar year 2025. Of every $100 it spent, $90.55 went to program services, $4.50 to management and general costs and $4.95 to fundraising. Its largest source of revenue was contributions and grants: 92.2% of the total. Government grants made up 6.1%. The highest compensation it reported for one person was $472,042 (CEO AND CSO). 11 people received more than $100,000 in reportable compensation. Revenue rose 22% between 2019 and 2025. Source: Form 990, 2025.
Where $100 of spending went
Calendar year 2025 · Form 990, Part IX, line 25 · total expenses $13MFor context, the median across 169 covered medical research charities: $87.02 programs, $12.87 management, $0.11 fundraising (medians computed separately, so they may not sum to $100).
Where $100 of revenue came from
Calendar year 2025 · Form 990, Part VIII · total revenue $16MThe 990 scorecard · same measures for every charity, no grades
| Measure | 2025 | Median |
|---|---|---|
| Program services Part IX 25(B) ÷ 25(A) | 90.5% | 83.9% |
| Management & general Part IX 25(C) ÷ 25(A) | 4.5% | 12.4% |
| Fundraising Part IX 25(D) ÷ 25(A) | 5.0% | 0.1% |
| Fundraising cost per $1 of contributions Part IX 25(D) ÷ Part VIII 1h | $0.04 | $0.01 |
| Contributions & grants share of revenue Part VIII 1h ÷ 12 | 92.2% | 72.7% |
| Government grants share of revenue Part VIII 1e ÷ 12 | 6.1% | 0.0% |
| Program service revenue share Part VIII 2g ÷ 12 | 3.9% | 5.8% |
| Highest reported compensation Part VII-A, columns D–F | $472,042 | $628,890 |
| Highest compensation as share of expenses Part VII-A ÷ Part IX 25(A) | 3.60% | 1.94% |
| People paid over $100,000 Part VII, line 2 | 11 | 18 |
| Net assets, in months of expenses Part X 33(B) ÷ monthly expenses | 17.6 | 13.3 |
| Independent voting board members Part VI 1a–1b | 17 of 18 | 93.8% |
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
2025 · Form 990, Part III · the three largest programs by expenseAls tdi combines the passion and dedication of a nonprofit organization with the entrepreneurial and scientific spirit of a biotechnology company. Our laboratory is the leading drug discovery program for als, and it bridges a critical research gap. Our in-house expertise translates research into potential drug candidates by screening drugs in the sod1 mouse model of als. Our scientific collaborations are designed to bring the most promising leads closer to patient use. We share emerging knowledge on the disease with patients, physicians, and researchers as quickly and comprehensively as…
Highest reported compensation
2025 · 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 |
|---|---|---|---|---|
| CEO AND CSO Director/trustee, officer, 40.00 hrs/week | $436,433 | $0 | $35,609 | $472,042 |
| VP OF RESEARCH Highest compensated employee, 40.00 hrs/week | $194,572 | $0 | $12,913 | $207,485 |
| SENIOR VP OF DEVELOPMENT Highest compensated employee, 40.00 hrs/week | $177,160 | $0 | $9,765 | $186,925 |
| SENIOR DIRECTOR, CELL BIOLOGY Highest compensated employee, 40.00 hrs/week | $173,063 | $0 | $9,391 | $182,454 |
| SENIOR DIRECTOR OF PHARMACOLOGY Highest compensated employee, 40.00 hrs/week | $161,717 | $0 | $13,010 | $174,727 |
| PRINC. INVEST., REAL WORLD EVIDENCE Highest compensated employee, 40.00 hrs/week | $139,506 | $0 | $4,817 | $144,323 |
11 people received more than $100,000 in reportable compensation from ALS Therapy Development Foundation (Part VII, line 2). Compensation of current officers, directors and key employees totaled $478K (Part IX, line 5).
7 years of filings
Form 990, Parts I, VII, IX and X · each row is that year's own filing, linkedGovernance answers, as filed
2025 · 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–1b18 · 17 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 2Yes
- 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 4No
- Over $15,000 of professional fundraising services Part IV 18Yes
- Over $10,000 of activity outside the U.S. Part IV 14bNo
- Employees Part I, line 565
- Volunteers Part I, line 6500
Largest outside contractors
2025 · Form 990, Part VII, Section B · businesses only| INSOURCE SERVICES INC Finance, hr & it | $655,052 |
| THE JACKSON LABORATORY Research consultant | $199,142 |
| ALBERT EINSTEIN COLLEGE OF MEDICINE Research consultant | $137,111 |
Individuals listed as contractors are left out. 5 contractors were paid more than $100,000 in all.
Private foundation grants it received
16 private foundations reported grants to ALS Therapy Development Foundation totaling $148K 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 ALS Therapy Development Foundation's own Form 990. If one doesn't match the filing, that's our error and we'll fix it. If you work for ALS Therapy Development Foundation, you can publish a response that is linked from this page.
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Of every $100 ALS Therapy Development Foundation spent in 2025, $90.55 went to programs. The full breakdown, from its IRS Form 990:
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Similar-sized charities in this cause
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All medical research charities · Largest charities in Massachusetts
Questions people ask
How much of ALS Therapy Development Foundation's spending goes to programs?
In calendar year 2025, ALS Therapy Development Foundation reported that 90.5% of its $13.1 million in expenses went to program services, 4.5% to management and general and 5.0% to fundraising (Form 990, Part IX).
How much does ALS Therapy Development Foundation pay its top executive?
The largest total compensation ALS Therapy Development Foundation reported for one person in calendar year 2025 was $472,042, for the role of CEO AND CSO (Form 990, Part VII, including compensation from related organizations and other compensation).
Where does ALS Therapy Development Foundation get its money?
Of $16.1 million in revenue in calendar year 2025, 92.2% came from contributions and grants (including 6.1% from government grants) and 3.9% from program service revenue (Form 990, Part VIII).
Is ALS Therapy Development Foundation a registered charity?
The IRS lists EIN 04-3462719 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, 2025. A filing shows what the organization reported; it doesn't by itself show whether a program works.
Sources
- 2025: Form 990 for calendar year 2025, object 202601749349301105 · read the filing · XML
- 2024: Form 990 for calendar year 2024, object 202501779349300810 · read the filing
- 2023: Form 990 for calendar year 2023, object 202421779349301522 · read the filing
- 2022: Form 990 for calendar year 2022, object 202302519349300435 · read the filing
- 2021: Form 990 for calendar year 2021, object 202222989349301587 · read the filing
- 2020: Form 990 for calendar year 2020, object 202123169349306257 · read the filing
- 2019: Form 990 for calendar year 2019, object 202041839349301304 · read the filing
All filings for EIN 04-3462719: ProPublica Nonprofit Explorer · IRS Tax Exempt Organization Search. Figures are as the organization reported them; we have not audited them.