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Nonprofit · EIN 31-1405490

THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC

Tax-exempt · WASHINGTON, DC 20005

Financials

$13.9M$12.1M2023$14.3M$12.9M2024$12M$11.9M2025
Revenue Expenses · by fiscal year end
Financials of THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC by year, from its e-filed returns
Year endedFormRevenueExpensesNet incomeTotal assetsLiabilitiesNet assets
December 31, 2025990$12,049,446$11,895,953$153,493$12,713,304$1,186,492$11,526,812
December 31, 2024990$14,311,761$12,881,402$1,430,359$12,567,424$1,109,314$11,458,110
December 31, 2023990$13,881,085$12,112,486$1,768,599$10,440,900$634,715$9,806,185
Financial details: 990 for the year ended December 31, 2025

Revenue

Contributions, gifts and grants
$8,061,163
Program service revenue
$2,310,082
Investment income
$174,692
Net gain from sales of assets
-$1,201
Net income from fundraising events
-$119,790
Other revenue
$1,503,509

Expenses

Grants and similar amounts paid
$1,500,817
Compensation of officers, directors and key employees
$391,500
Other salaries and wages
$3,237,043
Salaries, compensation and benefits (total)
$4,341,780
Professional fundraising fees
$0
Legal fees
$120,808
Accounting fees
$24,000
Occupancy
$67,586
Depreciation
$8,117
Program services (functional)
$10,435,388
Management and general (functional)
$834,189
Fundraising (functional)
$626,376

Balance sheet and other

Total assets, start of year
$12,567,424
Total assets, end of year
$12,713,304
Total liabilities, end of year
$1,186,492
Net assets, end of year
$11,526,812
Land, buildings and equipment
$5,583
Publicly traded securities
$419,791
Net assets without donor restrictions
$9,746,314
Net assets with donor restrictions
$1,780,498
Gross receipts
$13,108,512
Employees
28
Volunteers
550
Year formed
1997
State of legal domicile
OH

From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.

Officers, directors and key employees

As listed on the 990 for the year ended December 31, 2025, highest compensation first.

NameTitleHours / weekCompensationOther / benefits
PATRICIA A FURLONGPRESIDENT AND CEO
Officer
40$391,500$14,365
KAYLAN MOITOSOCHIEF BUSINESS OFFICER
Highest-paid employee
40$316,440$10,996
MEGAN FREEDCHIEF OF STRATEGIC INITIATIVES
Highest-paid employee
40$209,234$18,370
KIMBERLY GALBERAITHPRINCIPAL CREATIVE DIRECTOR
Highest-paid employee
40$190,487$22,725
ANN MARTINVICE PRESIDENT, COMMUNITY RESEARCH & GENETIC SVCS.
Highest-paid employee
40$186,369$22,346
RACHEL SCHRADERVICE PRESIDENT, CLINICAL CARE & EDUCATION
Highest-paid employee
40$177,589$9,069
JOHN KILLIANCHAIR
Trustee or director, Officer
8$0$0
ALPA KHUSHALANIVICE CHAIR
Trustee or director, Officer
6$0$0
DAWN REZKALLATREASURER
Trustee or director, Officer
6$0$0
DEANNE FRIARSECRETARY
Trustee or director, Officer
6$0$0
COLIN RENSCHDIRECTOR
Trustee or director
2$0$0
MICHELLE FURLONGDIRECTOR
Trustee or director
2$0$0
SCOTT PERRIN PHDDIRECTOR
Trustee or director
2$0$0
MARU CHAPURDIRECTOR
Trustee or director
2$0$0
SUSAN HUANGDIRECTOR
Trustee or director
2$0$0
4 more people on this return
NameTitleHours / weekCompensation
SUSAN APKONDIRECTOR
Trustee or director
2$0
TIM CRIPE MD PHDDIRECTOR
Trustee or director
2$0
LINDA CRIPE MDEMERITUS
Trustee or director
2$0
DAVID HOFSTEIN JDEMERITUS
Trustee or director
2$0
990 for the year ended December 31, 2024: 21 people
NameTitleHours / weekCompensationOther / benefits
PATRICIA A FURLONGPRESIDENT AND CEO
Officer
40$370,075$13,694
KAYLAN MOITOSOCHIEF BUSINESS OFFICER
Highest-paid employee
40$293,650$9,025
RACHEL SCHRADERVICE PRESIDENT, CLINICAL CARE & EDUCATION
Highest-paid employee
40$174,800$33,557
JODI WOLFFCHIEF PROGRAM OFFICER
Highest-paid employee
40$194,569$12,395
ANN MARTINVICE PRESIDENT, COMMUNITY RESEARCH & GENETIC SERV.
Highest-paid employee
40$176,600$16,829
GRETCHEN EGNERBOARD CHAIRMAN
Trustee or director, Officer
8$0$0
ALPA KHUSHALANIVICE CHAIR
Trustee or director, Officer
8$0$0
DAWN REZKALLATREASURER
Trustee or director, Officer
6$0$0
DEANNE FRIARSECRETARY
Trustee or director, Officer
6$0$0
DAVID N HOFSTEINEXECUTIVE COMMITTEE
Trustee or director
6$0$0
SUE APKONDIRECTOR
Trustee or director
2$0$0
JEFFREY BIGELOWDIRECTOR
Trustee or director
2$0$0
MARU CHAPURDIRECTOR
Trustee or director
2$0$0
TIMOTHY CRIPEDIRECTOR
Trustee or director
2$0$0
MICHELLE FURLONGDIRECTOR
Trustee or director
2$0$0
LANCE HESTERDIRECTOR
Trustee or director
2$0$0
SUSAN HUANGDIRECTOR
Trustee or director
2$0$0
JOHN KILLIANDIRECTOR
Trustee or director
2$0$0
RICHARD KLEINDIRECTOR
Trustee or director
2$0$0
SCOTT PERRINDIRECTOR
Trustee or director
2$0$0
COLIN RENSCHDIRECTOR
Trustee or director
2$0$0
990 for the year ended December 31, 2023: 21 people
NameTitleHours / weekCompensationOther / benefits
PATRICIA A FURLONGPRESIDENT AND CEO
Officer
40$371,400$15,379
KAYLAN MOITOSOCHIEF BUSINESS OFFICER
Highest-paid employee
40$256,267$10,431
ANN MARTINVICE PRESIDENT, COMMUNITY RESEARCH & GENETIC SERVI
Highest-paid employee
40$172,800$22,640
NICOLE HERRINGVICE PRESIDENT, DEVELOPMENT & COMMUNITY ENGAGEMENT
Highest-paid employee
40$157,850$34,706
ERIC CAMINOVICE PRESIDENT, RESEARCH AND CLINICAL INNOVATION
Highest-paid employee
40$159,938$22,180
GRETCHEN EGNERBOARD CHAIRMAN
Trustee or director, Officer
8$0$0
ALPA KHUSHALANIVICE CHAIR
Trustee or director, Officer
8$0$0
DAWN REZKALLATREASURER
Trustee or director, Officer
6$0$0
DEANNE FRIARSECRETARY
Trustee or director, Officer
6$0$0
DAVID N HOFSTEINEXECUTIVE COMMITTEE
Trustee or director
6$0$0
JOHN KILLIANEXECUTIVE COMMITTEE
Trustee or director
6$0$0
RASHA ALNAIBARIDIRECTOR
Trustee or director
2$0$0
SUE APKONDIRECTOR
Trustee or director
2$0$0
JEFFREY BIGELOWDIRECTOR
Trustee or director
2$0$0
TIMOTHY CRIPEDIRECTOR
Trustee or director
2$0$0
ANESSA FEHSENFELDDIRECTOR
Trustee or director
2$0$0
MICHELLE FURLONGDIRECTOR
Trustee or director
2$0$0
LANCE HESTERDIRECTOR
Trustee or director
2$0$0
RICHARD KLEINDIRECTOR
Trustee or director
2$0$0
COLIN RENSCHDIRECTOR
Trustee or director
2$0$0
BETH WHITEDIRECTOR
Trustee or director
2$0$0

Address and contacts

Address (IRS master file)
1012 14TH ST NW STE 500, WASHINGTON, DC 20005-3406
Principal officer (990 for 2025)
PATRICIA A FURLONG, 1012 14TH STREET NW 500, WASHINGTON, DC 20005
Signed the 990
PATRICIA A FURLONG, FOUNDING PRESIDENT/CEO
Phone
(201) 250-8440
Return prepared by
JAMES M WOOD CPA

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.

990 for the year ended December 31, 2025

Program accomplishments

  • 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

What it must file and when

IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.

Tax yearYear endedDueIRS public records
2025December 31, 2025May 15, 2026990 on file
2024December 31, 2024May 15, 2025990 on file
2023December 31, 2023May 15, 2024990 on file

IRS record

EIN
31-1405490
Tax-exempt status
501(c)(3): Charitable, religious, educational or scientific organization
Foundation status
Publicly supported organization (170(b)(1)(A)(vi))
Donations deductible (Pub 78)
Public charity, 50% deduction limit
Exempt since
1994
Accounting year ends
December
Files
Form 990 or 990-EZ
Category (NTEE)
Human services (P20Z)
Assets (IRS master file)
$12,713,304
Income (IRS master file)
$13,108,512

Filing history

FormYear endedRevenueExpensesAssetsReturn
990December 2025$12,049,446$11,895,953$12,713,304XML
990December 2024$14,311,761$12,881,402$12,567,424XML
990December 2023$13,881,085$12,112,486$10,440,900XML
990December 2022$10,753,014$11,037,641$8,648,654IRS
990December 2021–––IRS
990December 2020–––IRS
990December 2019–––IRS
990December 2018–––IRS

990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 31-1405490).

Questions about THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC

What is the EIN of THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC?
The employer identification number (EIN) of THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC is 31-1405490.
Is THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC tax-exempt?
Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1994.
Are donations to THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC tax-deductible?
Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
Which annual return does THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC file?
Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
When is the next return of THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC due?
The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
When did THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC last file with the IRS?
The latest return in the IRS public files is the 990 for the year ended December 2025.
Who is the principal officer of THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC?
The 990 for the year ended December 31, 2025 names PATRICIA A FURLONG.
Who are the officers and directors of THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC?
The 990 for the year ended December 31, 2025 lists 19 people; 6 received compensation from the organization, the highest $391,500 (PATRICIA A FURLONG, PRESIDENT AND CEO).
How much revenue does THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC have?
On its 990 for the year ended December 31, 2025 it reported revenue of $12,049,446, expenses of $11,895,953 and total assets of $12,713,304 at year end.

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