Huntington's Disease Society of America
Huntington's Disease Society of America reported $11.2 million in revenue and $9.4 million in expenses for calendar year 2025. Of every $100 it spent, $78.29 went to program services, $8.32 to management and general costs and $13.39 to fundraising. Its largest source of revenue was contributions and grants: 101.3% of the total. The highest compensation it reported for one person was $334,981 (CHIEF EXECUTIVE OFFICER). 10 people received more than $100,000 in reportable compensation. Revenue rose 2% between 2019 and 2025. Source: Form 990, 2025.
Where $100 of spending went
Calendar year 2025 · Form 990, Part IX, line 25 · total expenses $9.4MFor context, the median across 2,433 covered unclassified charities: $88.27 programs, $11.68 management, $0.05 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 $11MOther revenue was negative: −$424K. The bar shows the positive sources only.
The 990 scorecard · same measures for every charity, no grades
| Measure | 2025 | Median |
|---|---|---|
| Program services Part IX 25(B) ÷ 25(A) | 78.3% | 86.7% |
| Management & general Part IX 25(C) ÷ 25(A) | 8.3% | 11.5% |
| Fundraising Part IX 25(D) ÷ 25(A) | 13.4% | 0.0% |
| Fundraising cost per $1 of contributions Part IX 25(D) ÷ Part VIII 1h | $0.11 | $0.01 |
| Contributions & grants share of revenue Part VIII 1h ÷ 12 | 101.3% | 29.9% |
| Government grants share of revenue Part VIII 1e ÷ 12 | 0.0% | 3.8% |
| Program service revenue share Part VIII 2g ÷ 12 | 0.0% | 58.9% |
| Highest reported compensation Part VII-A, columns D–F | $334,981 | $301,601 |
| Highest compensation as share of expenses Part VII-A ÷ Part IX 25(A) | 3.55% | 1.38% |
| People paid over $100,000 Part VII, line 2 | 10 | 6 |
| Net assets, in months of expenses Part X 33(B) ÷ monthly expenses | 18.3 | 6.8 |
| Independent voting board members Part VI 1a–1b | 14 of 14 | 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
2025 · Form 990, Part III · the three largest programs by expenseResearch - supports research as advised by its scientific advisory board. The research projects are involved in finding cures and treatments for huntington's disease
Patient and family services - provides counseling and referral services to patients with huntington's disease and their families
Community outreach - provides workshops, seminars, and symposiums on huntington's disease through a network of chapter affiliates and branches throughout the united states
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 |
|---|---|---|---|---|
| CHIEF EXECUTIVE OFFICER Officer, 35.00 hrs/week | $333,963 | $0 | $1,018 | $334,981 |
| CHIEF MISSION OFFICER Key employee, 35.00 hrs/week | $237,342 | $0 | $27,290 | $264,632 |
| CONTROLLER Highest compensated employee, 35.00 hrs/week | $156,410 | $0 | $48,107 | $204,517 |
| CHIEF OPERATIONS OFF (THRU 6/13/25) Officer, 35.00 hrs/week | $176,343 | $0 | $17,778 | $194,121 |
| DIRECTOR, MARKETING & COMMUNICATIONS Highest compensated employee, 35.00 hrs/week | $123,303 | $0 | $46,070 | $169,373 |
| REGIONAL DEVELOPMENT DIRECTOR Highest compensated employee, 35.00 hrs/week | $135,417 | $0 | $24,253 | $159,670 |
| ASSISTANT DIRECTOR, MISSION PROGRAMS Highest compensated employee, 35.00 hrs/week | $119,589 | $0 | $23,390 | $142,979 |
| REGIONAL DEVELOPMENT OFF, NE REGION Highest compensated employee, 35.00 hrs/week | $108,819 | $0 | $22,206 | $131,025 |
10 people received more than $100,000 in reportable compensation from Huntington's Disease Society of America (Part VII, line 2). Compensation of current officers, directors and key employees totaled $748K (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–1b14 · 14 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 18No
- Over $10,000 of activity outside the U.S. Part IV 14bYes
- Employees Part I, line 538
- Volunteers Part I, line 6500
Largest outside contractors
2025 · Form 990, Part VII, Section B · businesses only| JW MARRIOTT INDIANAPOLIS Event space for convention | $522,360 |
| LIBSHAP REALTY CORPORATION Realty | $330,421 |
| J&R GRAPHICS Printing | $164,341 |
| THORN RUN PARTNERS LLC Government affairs firm | $120,000 |
| TEN EVENTS INC Av rental for convention | $118,633 |
Individuals listed as contractors are left out. 7 contractors were paid more than $100,000 in all.
Private foundation grants it received
29 private foundations reported grants to Huntington's Disease Society of America totaling $185K 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 Huntington's Disease Society of America's own Form 990. If one doesn't match the filing, that's our error and we'll fix it. If you work for Huntington's Disease Society of America, you can publish a response that is linked from this page.
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Of every $100 Huntington's Disease Society of America spent in 2025, $78.29 went to programs. The full breakdown, from its IRS Form 990:
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Questions people ask
How much of Huntington's Disease Society of America's spending goes to programs?
In calendar year 2025, Huntington's Disease Society of America reported that 78.3% of its $9.4 million in expenses went to program services, 8.3% to management and general and 13.4% to fundraising (Form 990, Part IX).
How much does Huntington's Disease Society of America pay its top executive?
The largest total compensation Huntington's Disease Society of America reported for one person in calendar year 2025 was $334,981, for the role of CHIEF EXECUTIVE OFFICER (Form 990, Part VII, including compensation from related organizations and other compensation).
Where does Huntington's Disease Society of America get its money?
Of $11.2 million in revenue in calendar year 2025, 101.3% came from contributions and grants and 0.0% from program service revenue (Form 990, Part VIII).
Is Huntington's Disease Society of America a registered charity?
The IRS lists EIN 13-3349872 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 202631759349300718 · read the filing · XML
- 2024: Form 990 for calendar year 2024, object 202533019349300803 · read the filing
- 2023: Form 990 for calendar year 2023, object 202413179349305161 · read the filing
- 2022: Form 990 for calendar year 2022, object 202311369349302256 · read the filing
- 2021: Form 990 for calendar year 2021, object 202222559349300832 · read the filing
- 2020: Form 990 for calendar year 2020, object 202121979349301117 · read the filing
- 2019: Form 990 for calendar year 2019, object 202031789349300808 · read the filing
All filings for EIN 13-3349872: ProPublica Nonprofit Explorer · IRS Tax Exempt Organization Search. Figures are as the organization reported them; we have not audited them.