The Parent Project for Muscular Dystrophy Research
The Parent Project for Muscular Dystrophy Research reported $12.0 million in revenue and $11.9 million in expenses for calendar year 2025. Of every $100 it spent, $87.72 went to program services, $7.01 to management and general costs and $5.27 to fundraising. Its largest source of revenue was contributions and grants: 66.9% of the total. The highest compensation it reported for one person was $405,865 (PRESIDENT AND CEO). 16 people received more than $100,000 in reportable compensation. Revenue rose 5% between 2019 and 2025. Source: Form 990, 2025.
Where $100 of spending went
Calendar year 2025 · Form 990, Part IX, line 25 · total expenses $12MFor context, the median across 3,614 covered human services charities: $88.27 programs, $11.52 management, $0.21 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 $12MThe 990 scorecard · same measures for every charity, no grades
| Measure | 2025 | Median |
|---|---|---|
| Program services Part IX 25(B) ÷ 25(A) | 87.7% | 87.2% |
| Management & general Part IX 25(C) ÷ 25(A) | 7.0% | 11.4% |
| Fundraising Part IX 25(D) ÷ 25(A) | 5.3% | 0.2% |
| Fundraising cost per $1 of contributions Part IX 25(D) ÷ Part VIII 1h | $0.08 | $0.02 |
| Contributions & grants share of revenue Part VIII 1h ÷ 12 | 66.9% | 20.6% |
| Government grants share of revenue Part VIII 1e ÷ 12 | 0.0% | 2.4% |
| Program service revenue share Part VIII 2g ÷ 12 | 19.2% | 70.8% |
| Highest reported compensation Part VII-A, columns D–F | $405,865 | $274,992 |
| Highest compensation as share of expenses Part VII-A ÷ Part IX 25(A) | 3.41% | 1.18% |
| People paid over $100,000 Part VII, line 2 | 16 | 6 |
| Net assets, in months of expenses Part X 33(B) ÷ monthly expenses | 11.6 | 6.9 |
| Independent voting board members Part VI 1a–1b | 13 of 13 | 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 expenseResearchppmd's research program identifies and funds the most promising near- and long-term therapeutic strategies for duchenne and becker muscular dystrophy. We invest across the development pipeline-from basic science to clinical application-while actively stimulating new research to keep the therapeutic pipeline robust. Through initiatives like the duchenne drug development roundtable, we foster industry collaboration to harmonize the clinical trial landscape and accelerate progress.in addition to funding academic and pre-clinical research, our venture pathways program invests in…
Educationppmd's education initiatives equip families, healthcare providers, and the broader community with the information needed to navigate duchenne care across all stages of the disorder. We partner with clinical and scientific experts to develop accurate, accessible resources and share them broadly. We also collaborate with domestic and international organizations to ensure educational materials reach global audiences.engagementppmd fosters a strong, informed, and connected community. Each summer, we host the world's largest duchenne conference, bringing together families, clinicians…
Advocacyppmd leads federal and state-level advocacy to improve access to care, accelerate therapeutic development, and ensure regulatory frameworks support the duchenne community. We provide advocates with the tools and information needed to engage policymakers and build congressional champions.we also spearhead efforts to expand newborn screening for duchenne, ensuring early diagnosis and access to interventions
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 |
|---|---|---|---|---|
| PRESIDENT AND CEO Officer, 40.00 hrs/week | $391,500 | $0 | $14,365 | $405,865 |
| CHIEF BUSINESS OFFICER Highest compensated employee, 40.00 hrs/week | $316,440 | $0 | $10,996 | $327,436 |
| CHIEF OF STRATEGIC INITIATIVES Highest compensated employee, 40.00 hrs/week | $209,234 | $0 | $18,370 | $227,604 |
| PRINCIPAL CREATIVE DIRECTOR Highest compensated employee, 40.00 hrs/week | $190,487 | $0 | $22,725 | $213,212 |
| VICE PRESIDENT, COMMUNITY RESEARCH & GENETIC SVCS. Highest compensated employee, 40.00 hrs/week | $186,369 | $0 | $22,346 | $208,715 |
| VICE PRESIDENT, CLINICAL CARE & EDUCATION Highest compensated employee, 40.00 hrs/week | $177,589 | $0 | $9,069 | $186,658 |
16 people received more than $100,000 in reportable compensation from The Parent Project for Muscular Dystrophy Research (Part VII, line 2). Compensation of current officers, directors and key employees totaled $392K (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–1b13 · 13 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 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 528
- Volunteers Part I, line 6550
Largest outside contractors
2025 · Form 990, Part VII, Section B · businesses only| FAEGRE DRINKER BIDDLE & REATH LLP Legal and regulatory consulting | $361,007 |
| PROMETHEUS RESEARCH Data technology | $247,145 |
| YOUR PART TIME CONTROLLER Accounting | $138,635 |
Individuals listed as contractors are left out. 4 contractors were paid more than $100,000 in all.
Private foundation grants it received
26 private foundations reported grants to The Parent Project for Muscular Dystrophy Research totaling $239K 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 The Parent Project for Muscular Dystrophy Research's own Form 990. If one doesn't match the filing, that's our error and we'll fix it. If you work for The Parent Project for Muscular Dystrophy Research, you can publish a response that is linked from this page.
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Of every $100 The Parent Project for Muscular Dystrophy Research spent in 2025, $87.72 went to programs. The full breakdown, from its IRS Form 990:
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Questions people ask
How much of The Parent Project for Muscular Dystrophy Research's spending goes to programs?
In calendar year 2025, The Parent Project for Muscular Dystrophy Research reported that 87.7% of its $11.9 million in expenses went to program services, 7.0% to management and general and 5.3% to fundraising (Form 990, Part IX).
How much does The Parent Project for Muscular Dystrophy Research pay its top executive?
The largest total compensation The Parent Project for Muscular Dystrophy Research reported for one person in calendar year 2025 was $405,865, for the role of PRESIDENT AND CEO (Form 990, Part VII, including compensation from related organizations and other compensation).
Where does The Parent Project for Muscular Dystrophy Research get its money?
Of $12.0 million in revenue in calendar year 2025, 66.9% came from contributions and grants and 19.2% from program service revenue (Form 990, Part VIII).
Is The Parent Project for Muscular Dystrophy Research a registered charity?
The IRS lists EIN 31-1405490 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 202622299349302077 · read the filing
- 2024: Form 990 for calendar year 2024, object 202522339349301912 · read the filing
- 2023: Form 990 for calendar year 2023, object 202412069349300631 · read the filing
- 2022: Form 990 for calendar year 2022, object 202312199349301496 · read the filing
- 2021: Form 990 for calendar year 2021, object 202223129349300842 · read the filing
- 2020: Form 990 for calendar year 2020, object 202113199349310076 · read the filing
- 2019: Form 990 for calendar year 2019, object 202032199349300328 · read the filing
All filings for EIN 31-1405490: ProPublica Nonprofit Explorer · IRS Tax Exempt Organization Search. Figures are as the organization reported them; we have not audited them.