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Families of Spinal Muscular Atrophy
Also known as Cure Sma
Families of Spinal Muscular Atrophy reported $15.2 million in revenue and $14.0 million in expenses for the fiscal year ending June 30, 2025. Of every $100 it spent, $77.32 went to program services, $9.28 to management and general costs and $13.40 to fundraising. Its largest source of revenue was contributions and grants: 50.4% of the total. The highest compensation it reported for one person was $348,806 (PRESIDENT). 16 people received more than $100,000 in reportable compensation. Revenue rose 26% between FY2020 and FY2025. Source: Form 990, FY2025.
Where $100 of spending went
The fiscal year ending June 30, 2025 · Form 990, Part IX, line 25 · total expenses $14MFor 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 fiscal year ending June 30, 2025 · Form 990, Part VIII · total revenue $15MThe 990 scorecard · same measures for every charity, no grades
| Measure | FY2025 | Median |
|---|---|---|
| Program services Part IX 25(B) ÷ 25(A) | 77.3% | 86.7% |
| Management & general Part IX 25(C) ÷ 25(A) | 9.3% | 10.6% |
| Fundraising Part IX 25(D) ÷ 25(A) | 13.4% | 0.4% |
| Fundraising cost per $1 of contributions Part IX 25(D) ÷ Part VIII 1h | $0.24 | $0.03 |
| Contributions & grants share of revenue Part VIII 1h ÷ 12 | 50.4% | 24.7% |
| Government grants share of revenue Part VIII 1e ÷ 12 | 0.0% | 0.6% |
| Program service revenue share Part VIII 2g ÷ 12 | 45.4% | 59.5% |
| Highest reported compensation Part VII-A, columns D–F | $348,806 | $391,657 |
| Highest compensation as share of expenses Part VII-A ÷ Part IX 25(A) | 2.49% | 1.45% |
| People paid over $100,000 Part VII, line 2 | 16 | 10 |
| Net assets, in months of expenses Part X 33(B) ÷ monthly expenses | 6.4 | 7.6 |
| Independent voting board members Part VI 1a–1b | 24 of 24 | 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 · Form 990, Part III · the three largest programs by expenseIndividuals with sma need specialized care and equipment, which can put enormous logistical and financial pressure on families. Cure sma is committed to making sure that families have the best, most accurate information about sma and what it means for them, and to making sure that they understand all the options and resources available to them from day-to-day care to the changing landscape of research breakthroughs and treatments. This includes our care series booklets, which are sent out as part of informational packets available at no cost to anyone who requests one. Developed by medical…
Cure sma focuses on three different yet equally critical and interdependent research areas: basic research, to understand the cause and biology of sma; drug discovery, to convert basic research ideas into practical new drug candidates; and clinical & regulatory research, to provide the infrastructure to test the drug candidates. During this period cure sma funded six new and six ongoing basic research grants. We also funded and executed multiple clinical and regulatory focused projects, to increase sma clinical trial site capacity and readiness, to provide regulatory authorities with data on…
We hosted the 2025 annual sma conference in anaheim, ca with over 2,739 registered attendees. Our annual conference is an invaluable resource for the entire sma community. The conference is the largest in the world focused specifically on sma. The researcher and clinical care conference attracted the top scientists and companies in the field. The community conference includes a variety of workshops, keynote sessions with leading experts, and more-plus great events such as our teen and adults with sma socials, the family friendly researcher poster session and our meet & greet, with a family…
Highest reported compensation
FY2025 · 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 Officer, 70.00 hrs/week | $329,195 | $0 | $19,611 | $348,806 |
| CHIEF DEVELOPMENT OFFICER Key employee, 60.00 hrs/week | $266,038 | $0 | $28,541 | $294,579 |
| CHIEF OPERATING OFFICER Key employee, 60.00 hrs/week | $208,905 | $0 | $30,552 | $239,457 |
| CHIEF MEDICAL OFFICER (THROUGH 3/31/25) Key employee, 60.00 hrs/week | $218,342 | $0 | $10,202 | $228,544 |
| SR VICE PRESIDENT, COMMUNI Highest compensated employee, 60.00 hrs/week | $175,435 | $0 | $27,061 | $202,496 |
| VICE PRESIDENT, POLICY Highest compensated employee, 50.00 hrs/week | $149,595 | $0 | $13,548 | $163,143 |
| VICE PRESIDENT, CLINICAL RESEARCH & CARE Highest compensated employee, 50.00 hrs/week | $138,474 | $0 | $20,241 | $158,715 |
| VICE PRESIDENT OF RESEARCH Highest compensated employee, 50.00 hrs/week | $146,346 | $0 | $7,311 | $153,657 |
16 people received more than $100,000 in reportable compensation from Families of Spinal Muscular Atrophy (Part VII, line 2). Compensation of current officers, directors and key employees totaled $1.2M (Part IX, line 5).
6 years of filings
Form 990, Parts I, VII, IX and X · each row is that year's own filing, linkedGovernance answers, as filed
FY2025 · 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–1b24 · 24 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 553
- Volunteers Part I, line 66,800
Private foundation grants it received
15 private foundations reported grants to Families of Spinal Muscular Atrophy totaling $46,062 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 Families of Spinal Muscular Atrophy's own Form 990. If one doesn't match the filing, that's our error and we'll fix it. If you work for Families of Spinal Muscular Atrophy, you can publish a response that is linked from this page.
Share or embed this breakdown
Of every $100 Families of Spinal Muscular Atrophy spent in FY2025, $77.32 went to programs. The full breakdown, from its IRS Form 990:
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Questions people ask
How much of Families of Spinal Muscular Atrophy's spending goes to programs?
In the fiscal year ending June 30, 2025, Families of Spinal Muscular Atrophy reported that 77.3% of its $14.0 million in expenses went to program services, 9.3% to management and general and 13.4% to fundraising (Form 990, Part IX).
How much does Families of Spinal Muscular Atrophy pay its top executive?
The largest total compensation Families of Spinal Muscular Atrophy reported for one person in the fiscal year ending June 30, 2025 was $348,806, for the role of PRESIDENT (Form 990, Part VII, including compensation from related organizations and other compensation).
Where does Families of Spinal Muscular Atrophy get its money?
Of $15.2 million in revenue in the fiscal year ending June 30, 2025, 50.4% came from contributions and grants and 45.4% from program service revenue (Form 990, Part VIII).
Is Families of Spinal Muscular Atrophy a registered charity?
The IRS lists EIN 36-3320440 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: Form 990 for the fiscal year ending June 30, 2025, object 202513169349304516 · read the filing · XML
- FY2024: Form 990 for the fiscal year ending June 30, 2024, object 202413199349311916 · read the filing
- FY2023: Form 990 for the fiscal year ending June 30, 2023, object 202343199349308894 · read the filing
- FY2022: Form 990 for the fiscal year ending June 30, 2022, object 202242919349301314 · read the filing
- FY2021: Form 990 for the fiscal year ending June 30, 2021, object 202143089349301819 · read the filing
- FY2020: Form 990 for the fiscal year ending June 30, 2020, object 202043159349303769 · read the filing
All filings for EIN 36-3320440: ProPublica Nonprofit Explorer · IRS Tax Exempt Organization Search. Figures are as the organization reported them; we have not audited them.