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Nonprofiteer
← THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC

Form 990 for tax year 2025

Filed by THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC.

Totals

Total revenue
$12,049,446
Total expenses
$11,895,953
Contributions and grants received
$8,061,163
Grants paid
$1,500,817
Program service revenue
$2,310,082
Investment income
$174,692
Other revenue
$1,503,509
Total assets, end of year
$12,713,304
Total liabilities, end of year
$1,186,492
Net assets or fund balances, end of year
$11,526,812
Program services expenses (Part IX)
$10,435,388
Management and general expenses
$834,189
Fundraising expenses
$626,376
Program service expenses (Part III)
$10,435,388

Program services were 87.7% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1c · Fundraising events

    $3,207,704

  • 1f · All other contributions, gifts and grants

    $4,853,459

  • 2a · Program service revenue: OTHER MEETINGS AND CONFERENCES

    total $952,608 · related or exempt $952,608

  • 2b · Program service revenue: CONFERENCE INCOME

    total $806,840 · related or exempt $806,840

  • 2c · Program service revenue: PROGRAM SERVICE REVENUE

    total $550,634 · related or exempt $550,634

  • 3 · Investment income

    total $175,893 · excluded $175,893

  • 7a · Gross sales of assets other than inventory

    securities $715,514

  • 7b · Less cost or other basis and sales expenses

    securities $716,715

  • 7c · Gain or loss

    securities -$1,201

  • 7d · Net gain or loss

    total -$1,201 · related or exempt -$1,201

  • 8a · Fundraising events: gross income

    $222,561

  • 8a · Fundraising events: contributions included on line 1c

    $3,207,704

  • 8b · Fundraising events: direct expenses

    $342,351

  • 8c · Net income from fundraising events

    total -$119,790 · excluded -$119,790

  • 11a · Other revenue: REVENUE SHARING

    total $1,594,356 · related or exempt $1,594,356

  • 11b · Other revenue: OTHER

    total $15,803 · related or exempt $15,803

  • 11c · Other revenue: RECOVERY OF PREVIOUSLY AWARDED GR

    total $13,707 · related or exempt $13,707

  • 11d · All other revenue

    total -$567 · related or exempt -$567

  • 11e · Other revenue, total

    $1,623,299

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $1,344,321 · program services $1,344,321

  • 3 · Grants to foreign organizations and individuals

    total $156,496 · program services $156,496

  • 5 · Compensation of officers, directors and key employees

    total $391,500 · program services $332,775 · management and general $19,575 · fundraising $39,150

  • 7 · Other salaries and wages

    total $3,237,043 · program services $2,764,416 · management and general $212,177 · fundraising $260,450

  • 8 · Pension plan contributions

    total $151,926 · program services $123,531 · management and general $16,119 · fundraising $12,276

  • 9 · Other employee benefits

    total $308,187 · program services $250,560 · management and general $32,669 · fundraising $24,958

  • 10 · Payroll taxes

    total $253,124 · program services $205,816 · management and general $26,856 · fundraising $20,452

  • 11b · Fees: legal

    total $120,808 · program services $104,738 · management and general $10,335 · fundraising $5,735

  • 11c · Fees: accounting

    total $24,000 · management and general $24,000

  • 11g · Fees: other

    total $1,254,470 · program services $968,076 · management and general $260,681 · fundraising $25,713

  • 12 · Advertising and promotion

    total $38,539 · program services $38,422 · fundraising $117

  • 13 · Office expenses

    total $7,904 · program services $1,110 · management and general $6,317 · fundraising $477

  • 16 · Occupancy

    total $67,586 · program services $59,886 · management and general $7,700

  • 19 · Conferences, conventions and meetings

    total $183,107 · program services $183,107

  • 22 · Depreciation, depletion and amortization

    total $8,117 · program services $7,116 · management and general $575 · fundraising $426

  • 23 · Insurance

    total $21,032 · program services $15,194 · management and general $4,449 · fundraising $1,389

  • 24a · Other expenses: ANNUAL CONFERENCE

    total $1,390,799 · program services $1,390,799 · management and general $0 · fundraising $0

  • 24b · Other expenses: PROGRAM SUPPLIES

    total $662,753 · program services $662,753 · management and general $0 · fundraising $0

  • 24c · Other expenses: MEALS

    total $592,219 · program services $586,150 · management and general $5,199 · fundraising $870

  • 24d · Other expenses: TRAVEL

    total $515,250 · program services $458,173 · management and general $26,210 · fundraising $30,867

  • 24e · All other expenses

    total $1,166,772 · program services $781,949 · management and general $181,327 · fundraising $203,496

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $5,201,236 · end of year $5,041,500

  • 2 · Savings and temporary cash investments

    beginning of year $1,500,774 · end of year $1,501,070

  • 3 · Pledges and grants receivable

    beginning of year $940,770 · end of year $1,284,622

  • 7 · Other notes and loans receivable

    beginning of year $550,137 · end of year $814,026

  • 8 · Inventories for sale or use

    beginning of year $87,886 · end of year $100,321

  • 9 · Prepaid expenses and deferred charges

    beginning of year $474,736 · end of year $322,705

  • 10a · Land, buildings and equipment: cost or other basis

    $57,034

  • 10b · Land, buildings and equipment: accumulated depreciation

    $51,451

  • 10c · Land, buildings and equipment, net

    beginning of year $14,267 · end of year $5,583

  • 11 · Investments: publicly traded securities

    beginning of year $505,462 · end of year $419,791

  • 12 · Investments: other securities

    beginning of year $2,357,590 · end of year $2,247,625

  • 13 · Investments: program-related

    beginning of year $850,479 · end of year $850,479

  • 15 · Other assets

    beginning of year $84,087 · end of year $125,582

  • 17 · Accounts payable and accrued expenses

    beginning of year $458,828 · end of year $576,122

  • 18 · Grants payable

    beginning of year $556,646 · end of year $75,000

  • 19 · Deferred revenue

    beginning of year $17,450 · end of year $464,448

  • 25 · Other liabilities

    beginning of year $76,390 · end of year $70,922

  • 27 · Net assets without donor restrictions

    beginning of year $9,034,708 · end of year $9,746,314

  • 28 · Net assets with donor restrictions

    beginning of year $2,423,402 · end of year $1,780,498

Mission and programs · 2025

Mission

THE PARENT PROJECT MUSCULAR DYSTROPHY (PPMD) FIGHTS TO END DUCHENNE. WE ACCELERATE RESEARCH, RAISE OUR VOICES TO IMPACT POLICY, DEMAND OPTIMAL CARE FOR EVERY SINGLE FAMILY, AND STRIVE TO ENSURE ACCESS TO APPROVED THERAPIES.

Activities or mission (Part I)

END DUCHENNE MUSCULAR DYSTROPHY THROUGH RESEARCH, ADVOCACY, EDUCATION, & OPTIMAL MEDICAL CARE.

  • RESEARCHPPMD'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 EARLY-STAGE BIOPHARMACEUTICAL COMPANIES TO DRIVE THE DEVELOPMENT OF NOVEL TREATMENTS FOR DUCHENNE AND BECKER MUSCULAR DYSTROPHY.THE DUCHENNE REGISTRYTHE DUCHENNE REGISTRY REMAINS THE LARGEST PATIENT-REPORTED REGISTRY FOR DUCHENNE, BECKER AND CARRIER FEMALES. OVER 6,000 PEOPLE FROM MORE THAN 125 COUNTRIES HAVE JOINED SINCE 2007, CONTRIBUTING OVER 18 YEARS OF DATA. REGISTRY DATA HAS BEEN EXPORTED FOR RESEARCHERS OVER 80 TIMES, AND THE REGISTRY HAS BEEN USED TO IDENTIFY AND CONNECT PEOPLE WITH DUCHENNE AND BECKER TO MORE THAN 100 CLINICAL TRIALS AND RESEARCH STUDIES. PPMD ALSO MANAGES COMPLEMENTARY INITIATIVES:THE INTERCHANGE PROVIDES A CENTRAL PATIENT-AND CLINICIAN REPORTED DATA WAREHOUSE SO ALL TYPES OF DUCHENNE DATA FROM VARIOUS SOURCES, INCLUDING THE DUCHENNE REGISTRY, ACADEMIC CONSORTIA, REAL-WORLD DATA FROM ELECTRONIC HEALTH RECORDS (EHRS), AND POST-MARKET STUDIES FROM INDUSTRY PARTNERS, ARE COLLECTED AND ANALYZED IN ONE PLACE. BY DE-SILOING DATA, THE INTERCHANGE DELIVERS A MORE COMPLETE PICTURE OF DUCHENNE AND BECKER AND HELPS CLINICAL RESEARCHERS AND PARTNERS IN THERAPY DEVELOPMENT ADDRESS COMMON RESEARCH CHALLENGES. THUS, RESEARCHERS CAN EFFECTIVELY CONDUCT THEIR WORK AND ACCELERATE SCIENTIFIC DISCOVERY AND PATIENT ACCESS TO NEW THERAPIES.CAREPPMD'S CARE PROGRAM ENSURES INDIVIDUALS WITH DUCHENNE HAVE ACCESS TO EXPERT CLINICAL TEAMS, APPROVED THERAPIES, AND COMPREHENSIVE MULTIDISCIPLINARY CARE ACROSS THEIR LIFESPAN. WE IDENTIFY GAPS IN CARE AND WORK COLLABORATIVELY WITH GLOBAL HEALTHCARE PROVIDERS TO CLOSE THOSE GAPS AND IMPROVE OUTCOMES.OUR CERTIFIED DUCHENNE CARE CENTER (CDCC) PROGRAM CERTIFIES CARE CENTERS THAT MEET RIGOROUS STANDARDS ALIGNED WITH THE DUCHENNE CARE GUIDELINES. THESE CENTERS COMMIT TO DELIVERING CONSISTENT, HIGH-QUALITY CARE BASED ON BEST PRACTICES.

    Expenses $6,955,873 · Grants $1,493,317 · Revenue $3,932,180

  • 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, RESEARCHERS, AND INDUSTRY PARTNERS TO SHARE UPDATES AND BUILD CONNECTIONS.THROUGHOUT THE YEAR, WE OFFER VIRTUAL AND IN-PERSON GATHERINGS FOR SUBGROUPS INCLUDING DUCHENNE CARRIERS, SIBLINGS, DADS, GRANDPARENTS, AND NEWLY DIAGNOSED FAMILIES.THROUGH PPMD TOGETHER, WE ALSO PROVIDE PERSONALIZED ONE-ON-ONE VIRTUAL SUPPORT TO HELP FAMILIES NAVIGATE THEIR INDIVIDUAL CHALLENGES.

    Expenses $2,438,077 · Grants $7,500

  • 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.

    Expenses $1,041,438

As filed on the 2025 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • John Killian

    CHAIR

    Total calculated
    $0
    Hours/week
    8

  • Alpa Khushalani

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    6

  • Dawn Rezkalla

    TREASURER

    Total calculated
    $0
    Hours/week
    6

  • Deanne Friar

    SECRETARY

    Total calculated
    $0
    Hours/week
    6

  • Colin Rensch

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Michelle Furlong

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Scott Perrin PhD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Maru Chapur

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Susan Huang

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Susan Apkon

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Tim Cripe MD PhD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Linda Cripe MD

    EMERITUS

    Total calculated
    $0
    Hours/week
    2

  • David Hofstein JD

    EMERITUS

    Total calculated
    $0
    Hours/week
    2

  • Patricia A Furlong

    PRESIDENT AND CEO

    Total calculated
    $405,865
    From this org
    $391,500
    From related orgs
    $0
    Other
    $14,365
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $362,500
    Bonus
    $29,000
    Other
    $0
    Deferred
    $14,333
    Nontaxable benefits
    $32
    Filer's total
    $405,865

  • Kaylan Moitoso

    CHIEF BUSINESS OFFICER

    Total calculated
    $327,436
    From this org
    $316,440
    From related orgs
    $0
    Other
    $10,996
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $293,000
    Bonus
    $23,440
    Other
    $0
    Deferred
    $10,867
    Nontaxable benefits
    $129
    Filer's total
    $327,436

  • Megan Freed

    CHIEF OF STRATEGIC INITIATIVES

    Total calculated
    $227,604
    From this org
    $209,234
    From related orgs
    $0
    Other
    $18,370
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $205,134
    Bonus
    $4,100
    Other
    $0
    Deferred
    $6,927
    Nontaxable benefits
    $11,443
    Filer's total
    $227,604

  • Ann Martin

    VICE PRESIDENT, COMMUNITY RESEARCH & GENETIC SVCS.

    Total calculated
    $208,715
    From this org
    $186,369
    From related orgs
    $0
    Other
    $22,346
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $172,569
    Bonus
    $13,800
    Other
    $0
    Deferred
    $9,380
    Nontaxable benefits
    $12,966
    Filer's total
    $208,715

  • Rachel Schrader

    VICE PRESIDENT, CLINICAL CARE & EDUCATION

    Total calculated
    $186,658
    From this org
    $177,589
    From related orgs
    $0
    Other
    $9,069
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $167,539
    Bonus
    $10,050
    Other
    $0
    Deferred
    $8,940
    Nontaxable benefits
    $129
    Filer's total
    $186,658

  • Kimberly Galberaith

    PRINCIPAL CREATIVE DIRECTOR

    Total calculated
    $213,212
    From this org
    $190,487
    From related orgs
    $0
    Other
    $22,725
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $179,714
    Bonus
    $10,773
    Other
    $0
    Deferred
    $8,965
    Nontaxable benefits
    $13,760
    Filer's total
    $213,212

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Answered yes

  • 3 · Compensation committee
  • 3 · Approval by the board or compensation committee

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

The 10 largest by cash amount. The API serves every itemized grant.

Provenance

Return type
form_990
Tax year
2025
Filed
17 August 2026
IRS schema version
2025v4.2
Source object
202622299349302077

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