The Parent Project for Muscular Dystrophy Research Inc
The Parent Project for Muscular Dystrophy Research Inc, known as Parent Project Muscular Dystrophy (PPMD), is a Washington, DC-based public charity formed in 1997. It works to end Duchenne muscular dystrophy by advancing research, influencing policy, promoting optimal care, and seeking access to approved therapies.
Key facts about The Parent Project for Muscular Dystrophy Research Inc
In short: The Parent Project for Muscular Dystrophy Research Inc gave $1.4M across 22 grants in 2025 (avg $61K), top state Florida. 19% of 2025 grantees were new. Source: 2025 IRS Form 990.
- EIN
- 31-1405490
- Latest 990 filing
- Form 990, 2025
- Annual giving (2025)
- $1,352,873
- Grants made (2025)
- 22
- Average grant
- $61,494
- Median grant
- $27,100
- New grantees (estimate)
- 19% first-time grantees (4 of 21, 2025; small sample)
- Total assets
- $12,713,304
- Primary geography
- Florida (42% of itemized 2025 grant dollars)
- Accepts unsolicited proposals
- Yes
- How to apply
- PPMD accepts unsolicited requests through its ad hoc Investigator Award opportunity, submitted through its Webgrants portal. Full details ↓
- Deadline
- The listed deadline for the Early Exon Skipping case-report opportunity was April 15, 2023, a past cycle.
Data from IRS Form 990, 2025; updated October 2026. New grantees are estimated by matching recipient names across years (methodology). Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Financial Overview
From 2025 IRS Form 990 · View filing
Total Assets
$12.7M
+1.2% YoY
Annual Giving
$1.4M
-44.8% YoY
Grant Count
22
-24.1% YoY
Avg Grant Size
$61K
-27.2% YoY
Is The Parent Project for Muscular Dystrophy Research Inc open to new grantees?
19%
first-time grantees, 2025
In 2025, 4 of 21 grantees (19%) were first-time recipients. With only 21 grantees, that is a small sample: one grantee more or less moves the share by about 5 points. First grants averaged $102K; repeat grants $56K. How we count
Medians: $66K first-time, $25K repeat.
Estimate from itemized grant lists in IRS Form 990 filings (2019–2025). Recipient names are matched across years, so a renamed or misspelled grantee can look new; grants to individuals are left out. Methodology.
Mission & Focus Areas
PPMD’s stated mission is to fight to end Duchenne, accelerate research, influence policy, demand optimal care for families, and strive to ensure access to approved therapies. Its research program identifies and funds near- and long-term therapeutic strategies for Duchenne and Becker muscular dystrophy, and aims to stimulate research and collaboration that can advance therapy development.
The 2025 grants show support for research activities including preclinical therapeutic assessment, clinical research, biomarkers, fellowships, regulatory science, and patient preference. PPMD also supports data and research infrastructure. Its filing describes the Duchenne Registry, which includes people with Duchenne, Becker, and carrier females, and the Interchange, a data warehouse that brings together patient- and clinician-reported data from multiple sources.
Among the organizations supported in 2025, Critical Path Institute describes its mission as advancing medical innovation and regulatory science through teams that share data, knowledge, and expertise. Children’s National Research Institute describes its work as translational and clinical medical research and education intended to improve understanding, prevention, treatment, and care of childhood diseases. Northwestern University describes a commitment to teaching, research, and student development. These are the grantees’ stated missions, not PPMD’s.
Grantmaking
In filing year 2025, PPMD reported 22 grants totaling $1,352,873. Grant amounts ranged from $7,500 to $300,000, with a median of $27,100. Its largest reported awards included $300,000 to the University of Florida Foundation for a preclinical therapeutic assessment lab; $199,875 to the University of Florida Board of Trustees for a Wellstone supplement; $134,961 to Ohio State University for patient preference research; and $100,000 each to Critical Path Institute for support of the Duchenne Regulatory Science Consortium and Massachusetts General Hospital for a research fellowship. Other notable awards included $93,597 to Northwestern University for a Wellstone supplement and $60,000 to Nationwide Children’s Hospital for meeting support.
PPMD’s website welcomes ad hoc submissions to its Investigator Award opportunity for novel research that can advance the field. Applications are reviewed by its Scientific Advisory Committee, ad hoc reviewers when specialized expertise is needed, and, for some projects, TREAT-NMD’s Advisory Committee on Therapeutics. The website says proposals should be highly relevant to Duchenne therapy development and may be submitted by qualified investigators with an MD, PhD, or equivalent degree and access to the institutional resources needed to conduct the work. Awardees are expected to complete project milestones, submit records of applicable institutional or federal regulatory requirements, and publish results in a timely manner. PPMD’s filing also says its grant template requires periodic reporting on the use of funds and progress.
Review Cycle
The listed deadline for the Early Exon Skipping case-report opportunity was April 15, 2023, a past cycle. The 2022 joint call with Duchenne UK was also a past opportunity.
How to Apply
PPMD accepts unsolicited requests through its ad hoc Investigator Award opportunity, submitted through its Webgrants portal. Applications must fit its research grant initiatives; the website describes a case-by-case review process.
Open Grants
3 open opportunities from The Parent Project for Muscular Dystrophy Research Inc
CRISPR/Cas9 Technology Research Grant - UT Southwestern Medical Center
The Parent Project for Muscular Dystrophy Research Inc
Amount
$250,000
Deadline
Deadline not published
Robotics Initiative - Talem Technologies X-Ar Exoskeleton Grant
The Parent Project for Muscular Dystrophy Research Inc
Amount
$70,000
Deadline
Deadline not published
Upper Extremity Exoskeleton Research Grant - NJIT & Talem Technologies
The Parent Project for Muscular Dystrophy Research Inc
Amount
$600,000
Deadline
Deadline not published
Ready to take the next step with The Parent Project for Muscular Dystrophy Research Inc?
Geographic Focus
Where this funder awards grants
PPMD is based in Washington, DC. Its 2025 grantmaking reached recipients in multiple states; Florida received 42% of grant dollars, followed by Ohio at 14%, Massachusetts at 11%, and Arizona and Illinois at 7% each. These figures describe the location of 2025 grant recipients.
Grant Distribution by State
Share of 2025 grant dollars across all 22 itemized grants.
States
Cities
Giving Over Time
Total grant dollars and number of grants per year
From 2019 to 2025, annual grant giving ranged from $1.4M (2025) to $4.5M (2019). In 2025 it made 22 grants totaling $1.4M.
Grant Insights
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2025
The largest 2025 recipient was University of Florida Foundation ($300K). Together the top 10 received $1.2M.
Grant Size Distribution
117 grants across all recorded years
The most common grant size was under $50K: 57 grants of 117 (49%).
Giving History
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| University of Florida Foundation Gainesville, FL | Research- Preclinical Therapeutic Assessment Lab | $300,000 |
| University of Florida Board of Trustees Gainesville, FL | Research- Wellstone Supplement | $199,875 |
| Ohio State University Columbus, OH | Research- Patient Preference | $134,961 |
| Critical Path Tucson, AZ | Research- Support of Duchenne Regulatory Science Consortium | $100,000 |
| The General Hospital Corp DBS Massachusetts General Hospital Boston, MA | Research- Fellowship | $100,000 |
| Northwestern University Evanston, IL | Research- Wellstone Supplement | $93,597 |
| University of Florida Board of Trustees Gainesville, FL | Research- Biomarker | $65,000 |
| Nationwide Children's Hospital Columbus, OH | Research- Meeting Support | $60,000 |
| Analysis Groupctap Boston, MA | Research- Support of Collective Analysis Trajectory Project | $50,000 |
| Children's National Medical Center Washington, DC | Research- Dori EHR Program | $32,740 |
Financial History
Multi-year comparison from IRS filings
| Filing year | Assets | Revenue | Expenses | Grants reported |
|---|---|---|---|---|
| 2025 | $12,713,304 | $12,049,446 | $11,895,953 | $1,352,873 across 22 grants |
| 2024 | $12,567,424 | $14,311,761 | $12,881,402 | $2,450,828 across 29 grants |
| 2023 | $10,440,900 | $13,881,085 | $12,112,486 | $2,462,304 across 21 grants |
| Metric | 2025 | 2024 | 2023 |
|---|---|---|---|
| Total Assets | $12,713,304 | $12,567,424 | $10,440,900 |
| Revenue | $12,049,446 | $14,311,761 | $13,881,085 |
| Expenses | $11,895,953 | $12,881,402 | $12,112,486 |
| Net Investment Income | $174,692 | $150,586 | $88,569 |
Data update history
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2019 (received by the IRS August 6, 2020)
- Updated Form 990 for fiscal year 2020 (received by the IRS November 15, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS November 8, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS August 7, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS July 24, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS August 21, 2025)
- Added Form 990 for fiscal year 2025 (received by the IRS August 17, 2026)
- IRS filings on file for fiscal years 2019–2024
Leadership & Key People
Leadership team and compensation from IRS filings
The 2025 filing lists John Killian as chair, Alpa Khushalani as vice chair, Dawn Rezkalla as treasurer, and Deanne Friar as secretary. Directors listed are Colin Rensch, Michelle Furlong, Scott Perrin, PhD, Maru Chapur, Susan Huang, and Susan Apkon.
The Parent Project for Muscular Dystrophy Research Inc is led by Patricia A. Furlong, President & CEO since 2022 (on filings since 2019); 6 of 19 officers listed in 2025 are compensated.
Officers on the 2025 filing
Patricia A. Furlong
President & CEO
Founding CEO & President → President & CEO, 2022
On filings since 2019
40 hrs/week
$236K (2019) → $392K (2025)
John Killian
Chair
Executive Committee → Director, 2024
Director → Chair, 2025
On filings since 2019
8 hrs/week
No compensation reported
Kimberly Galberaith
Principal Creative Director
Creative Director, Projects & Events → Creative Director, 2021
Creative Director → Principal Creative Director, 2025
On filings since 2019
40 hrs/week
$176K (2019) → $190K (2025)
Colin Rensch
Director
Board Member → Director, 2023
On filings since 2019
2 hrs/week
No compensation reported
Michelle Furlong
Director
On filings since 2023
2 hrs/week
No compensation reported
Maru Chapur
Director
On filings since 2024
2 hrs/week
No compensation reported
Scott Perrin PhD
Director
On filings since 2024
2 hrs/week
No compensation reported
Susan Huang
Director
On filings since 2024
2 hrs/week
No compensation reported
Susan Apkon
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Tim Cripe MD PhD
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Ann Martin
Vice President, Community Research & Genetic Svcs.
Vice President, Community Research & Genetic Servi → Vice President, Community Research & Genetic Serv., 2024
Vice President, Community Research & Genetic Serv. → Vice President, Community Research & Genetic Svcs., 2025
On filings since 2019
40 hrs/week
$114K (2019) → $186K (2025)
Kaylan Moitoso
Chief Business Officer
Senior Vice President & Development → Chief Business Officer, 2020
On filings since 2019
40 hrs/week
$159K (2019) → $316K (2025)
Rachel Schrader
Vice President, Clinical Care & Education
Vice President, Clinical Care & Executive Director → Vice President, Clinical Care & Education, 2021
On filings since 2020
40 hrs/week
$133K (2020) → $178K (2025)
Megan Freed
Chief of Strategic Initiatives
New on the 2025 filing
40 hrs/week
$209K (2025)
David N. Hofstein
Emeritus
Executive Oversight Chair → Executive Committee, 2023
Executive Committee → Emeritus, 2025
On filings since 2019
2 hrs/week
No compensation reported
Linda Cripe MD
Emeritus
Board Member → Emeritus, 2025
On filings since 2019
2 hrs/week
No compensation reported
Deanne Friar
Secretary
On filings since 2021
6 hrs/week
No compensation reported
Alpa Khushalani
Vice Chair
On filings since 2023
6 hrs/week
No compensation reported
Dawn Rezkalla
Treasurer
On filings since 2023
6 hrs/week
No compensation reported
Former officers (30)
- Former: Jeffrey Bigelow (2019–2024) — Director
- Former: Lance Hester (2019–2024) — Director
- Former: Richard Klein (2019–2024) — Director
- Former: Gretchen Egner (2021–2024) — Board Chairman
- Former: Sue Apkon (2023–2024) — Director
- Former: Timothy Cripe (2023–2024) — Director
- Former: Jodi Wolff (2024) — Chief Program Officer
- Former: Anessa Fehsenfeld (2019–2023) — Director
- Former: Rasha Alnaibari (2019–2023) — Director
- Former: Beth White (2020–2023) — Director
- Former: Eric Camino (2020–2023) — Vice President, Research & Clinical Innovation
- Former: Nicole Herring (2021–2023) — Vice President, Development & Community Engagement
- Former: Christopher Jones (2019–2022) — Board Member
- Former: Ryan K. Fischer (2019–2022) — Chief Advocacy Officer
- Former: Jeff Bigelow (2021–2022) — Board Member
- Former: Erin Dresnick (2019–2021) — Director & Development
- Former: Amanda Wilkison (2021) — Senior Director, Clinical Care & Education
- Former: Nicole Armstrong (2021) — Senior Director, Committee Research & Genetic Services
- Former: Donna Saccamanno (2019–2020) — Board Member
- Former: Joanna Becker Johnson (2019–2020) — Secretary
- Former: Jonathan Finder (2019–2020) — Board Member
- Former: Kelly J. Dougherty (2019–2020) — Former Senior Vp-Finance & Administration
- Former: William P. Nolan (2019–2020) — Senior Vp- Communications
- Former: Abby H. Bronson (2019) — Senior Vice President & Research Strategy
- Former: Anne Kennedy (2019) — Senior Vice President, Legislation & Public Policy
- Former: Christine L. Piacentino (2019) — Board Secretary
- Former: Christopher B. Curran (2019) — Board Member
- Former: Elizabeth White (2019) — Board Member
- Former: Howard Kaplan (2019) — Board Member
- Former: Kathleen Kinnett (2019) — Senior Vice President & Clinical Care
Data from IRS Form 990 filings, 2019–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $392K, to Patricia a Furlong (President and CEO). 6 officers or directors reported compensation on that filing.
Contact
Mailing address: 1012 14Th Street Nw 500, Washington, DC 20005
Phone: (201) 250-8440
Website: https://parentprojectmd.org
Frequently asked questions about The Parent Project for Muscular Dystrophy Research Inc
How much does The Parent Project for Muscular Dystrophy Research Inc give each year?
The Parent Project for Muscular Dystrophy Research Inc gave $1.4M across 22 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $2.5M across 29 grants.
What is The Parent Project for Muscular Dystrophy Research Inc's typical grant size?
The Parent Project for Muscular Dystrophy Research Inc's median grant in 2025 was $27,100, and its average grant was $61,494, across 22 grants on its 2025 IRS Form 990. Organizations receiving their first grant from The Parent Project for Muscular Dystrophy Research Inc that year got $102K on average.
Where does The Parent Project for Muscular Dystrophy Research Inc give grants?
The Parent Project for Muscular Dystrophy Research Inc's top state is Florida, with 42% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were Ohio (14%) and Massachusetts (11%). The most frequent recipient cities were Gainesville, FL (3 grants), Columbus, OH (2 grants), Boston, MA (2 grants) and Nashville, TN (2 grants).
Does The Parent Project for Muscular Dystrophy Research Inc give general operating support?
Not in 2025: none of the 22 grants with a stated purpose on The Parent Project for Muscular Dystrophy Research Inc's 2025 IRS Form 990 were described as general or operating support. Recurring purposes include "Research- Dori EHR Program" (7 grants).
Who are The Parent Project for Muscular Dystrophy Research Inc's largest grantees?
The Parent Project for Muscular Dystrophy Research Inc's largest 2025 grantees include University of Florida Foundation ($300,000), University of Florida Board of Trustees ($264,875 across 2 grants) and Ohio State University ($134,961), according to its 2025 IRS Form 990. Together they received 52% of its itemized 2025 grant dollars.
How large is The Parent Project for Muscular Dystrophy Research Inc?
The Parent Project for Muscular Dystrophy Research Inc reported $12.7M in total assets on its 2025 IRS Form 990. Its revenue that year was $12.0M.
What does The Parent Project for Muscular Dystrophy Research Inc fund?
PPMD’s stated mission is to fight to end Duchenne, accelerate research, influence policy, demand optimal care for families, and strive to ensure access to approved therapies. See mission & focus areas ↑
How do I apply for a grant from The Parent Project for Muscular Dystrophy Research Inc?
PPMD accepts unsolicited requests through its ad hoc Investigator Award opportunity, submitted through its Webgrants portal. Eligibility and process details are in the grantmaking section of this profile. See how to apply ↑
What is The Parent Project for Muscular Dystrophy Research Inc's EIN?
The Parent Project for Muscular Dystrophy Research Inc's EIN (Employer Identification Number) is 31-1405490. IRS Form 990 filing data is available on this page for 2019–2025.
Does The Parent Project for Muscular Dystrophy Research Inc accept unsolicited proposals?
Yes, according to Grantable's research on the foundation's published guidelines. See how to apply ↑
Data last updated October 2026. Sourced from IRS Form 990 filings. Research dossier generated October 2026.
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