Civic Intelligence

The Parent Project for Muscular

EIN 31-1405490 • 501(c)3 • Washington, DC

View Organization Page

Profile

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.

1012 14th Street NW 500Washington, DC 20005

www.parentprojectmd.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

38th percentile

0.09x

Higher debt load relative to assets than 38% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Source year 2024

Liabilities / Revenue

27th percentile

0.08x

Higher debt load relative to revenue than 27% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Source year 2024

Net Margin

62nd percentile

10.0%

Higher net margin than 62% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Source year 2024

Top Officer Pay

85th percentile

$383,769

Higher top officer pay than 85% of similar nonprofits.

Top officer pay equals 2.7% of source-year revenue.

501(c)3 • $10M-$25M nonprofits • Source year 2024

Asset Growth

83rd percentile

20%

Faster asset growth than 83% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Annualized from 2023 to 2024

Revenue Growth

41st percentile

3.1%

Faster revenue growth than 41% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets38th percentile

Assets

Up

$12,567,424

Up $2,126,524 (+20%) from 2023

Liabilities

Up

$1,109,314

Up $474,599 (+75%) from 2023

Net Assets

Up

$11,458,110

Up $1,651,925 (+17%) from 2023

Operations
Liabilities / Revenue27th percentileNet Margin62nd percentile

Revenue

Up

$14,311,761

Up $430,676 (+3.1%) from 2023

Expenses

Up

$12,881,402

Up $768,916 (+6.3%) from 2023

Net Income

Down

$1,430,359

Down $338,240 (-19%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth83rd percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$15M$10M$5.0M$0Assets 2010: $2,985,828Liabilities 2010: $250,307Net Assets 2010: $2,735,5212010Assets 2011: $3,191,220Liabilities 2011: $342,883Net Assets 2011: $2,848,3372011Assets 2012: $2,885,159Liabilities 2012: $479,253Net Assets 2012: $2,405,9062012Assets 2013: $2,962,539Liabilities 2013: $1,013,099Net Assets 2013: $1,949,4402013Assets 2014: $1,881,140Liabilities 2014: $353,694Net Assets 2014: $1,527,4462014Assets 2015: $2,735,082Liabilities 2015: $236,923Net Assets 2015: $2,498,1592015Assets 2016: $4,507,799Liabilities 2016: $1,351,412Net Assets 2016: $3,156,3872016Assets 2017: $4,788,793Liabilities 2017: $1,402,724Net Assets 2017: $3,386,0692017Assets 2018: $5,732,769Liabilities 2018: $1,963,776Net Assets 2018: $3,768,9932018Assets 2019: $4,713,542Liabilities 2019: $361,870Net Assets 2019: $4,351,6722019Assets 2020: $7,136,426Liabilities 2020: $1,080,993Net Assets 2020: $6,055,4332020Assets 2021: $10,203,860Liabilities 2021: $1,504,388Net Assets 2021: $8,699,4722021Assets 2022: $8,648,654Liabilities 2022: $768,416Net Assets 2022: $7,880,2382022Assets 2023: $10,440,900Liabilities 2023: $634,715Net Assets 2023: $9,806,1852023Assets 2024: $12,567,424Liabilities 2024: $1,109,314Net Assets 2024: $11,458,1102024

Highlighted filing

2024

Assets$12,567,424
Liabilities$1,109,314
Net Assets$11,458,110
Open 2024 Filing

Operations Trend

Revenue Growth41st percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$15M$10M$5.0M$0-$5.0MExpenses 2010: $4,585,9132010Expenses 2011: $6,219,0592011Expenses 2012: $6,222,1282012Revenue 2013: $5,629,849Expenses 2013: $6,086,315Net Income 2013: -$456,4662013Revenue 2014: $5,937,014Expenses 2014: $6,359,008Net Income 2014: -$421,9942014Revenue 2015: $8,675,507Expenses 2015: $7,704,794Net Income 2015: $970,7132015Revenue 2016: $8,218,892Expenses 2016: $7,560,664Net Income 2016: $658,2282016Revenue 2017: $9,332,441Expenses 2017: $9,102,759Net Income 2017: $229,6822017Revenue 2018: $9,071,159Expenses 2018: $8,688,235Net Income 2018: $382,9242018Revenue 2019: $11,435,667Expenses 2019: $10,852,988Net Income 2019: $582,6792019Revenue 2020: $9,559,090Expenses 2020: $7,865,638Net Income 2020: $1,693,4522020Revenue 2021: $10,856,558Expenses 2021: $7,843,364Net Income 2021: $3,013,1942021Revenue 2022: $10,753,014Expenses 2022: $11,037,641Net Income 2022: -$284,6272022Revenue 2023: $13,881,085Expenses 2023: $12,112,486Net Income 2023: $1,768,5992023Revenue 2024: $14,311,761Expenses 2024: $12,881,402Net Income 2024: $1,430,3592024

Highlighted filing

2024

Revenue$14,311,761
Expenses$12,881,402
Net Income$1,430,359
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$12,567,424
Liabilities
$1,109,314
Net assets
$11,458,110
Revenue
$14,311,761
Expenses
$12,881,402
Net income
$1,430,359
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$12.6$1.11$11.5$14.3$12.9$1.43
2023Detailed filing. Detailed filing data is available for this year.$10.4$0.63$9.81$13.9$12.1$1.77
2022Detailed filing. Detailed filing data is available for this year.$8.65$0.77$7.88$10.8$11.0$0.28
2021Detailed filing. Detailed filing data is available for this year.$10.2$1.50$8.70$10.9$7.84$3.01
2020Detailed filing. Detailed filing data is available for this year.$7.14$1.08$6.06$9.56$7.87$1.69
2019Detailed filing. Detailed filing data is available for this year.$4.71$0.36$4.35$11.4$10.9$0.58
2018Detailed filing. Detailed filing data is available for this year.$5.73$1.96$3.77$9.07$8.69$0.38
2017Detailed filing. Detailed filing data is available for this year.$4.79$1.40$3.39$9.33$9.10$0.23
2016Detailed filing. Detailed filing data is available for this year.$4.51$1.35$3.16$8.22$7.56$0.66
2015Detailed filing. Detailed filing data is available for this year.$2.74$0.24$2.50$8.68$7.70$0.97
2014Detailed filing. Detailed filing data is available for this year.$1.88$0.35$1.53$5.94$6.36$0.42
2013Detailed filing. Detailed filing data is available for this year.$2.96$1.01$1.95$5.63$6.09$0.46
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.89$0.48$2.41$6.22
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$3.19$0.34$2.85$6.22
2010Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.99$0.25$2.74$4.59
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Jul 28, 2025
Return Version
2024v5.2
Gross Receipts
$15,003,956
Mission and Program Overview

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.

End duchenne muscular dystrophy through research, advocacy, education, & optimal medical care.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$3,303,990$5,201,236▲ $1,897,246
Investments Other Securities$2,113,362$2,357,590▲ $244,228
Savings and Temporary Cash Investments$1,500,476$1,500,774▲ $298
Pledges and Grants Receivable$1,565,673$940,770▼ $624,903
Investments Program Related$850,479$850,479→ $0
Other Notes and Loans Receivable, Net$252,548$550,137▲ $297,589
Investments in Publicly Traded Securities$282,716$505,462▲ $222,746
Prepaid Expenses and Deferred Charges$367,666$474,736▲ $107,070
Inventories for Sale or Use$65,513$87,886▲ $22,373
Land, Buildings, and Equipment, Net$20,361$14,267▼ $6,094
Total Assets$10,440,900$12,567,424▲ $2,126,524
Other Assets Total$118,116$84,087▼ $34,029
Liabilities
Grants Payable$102,502$556,646▲ $454,144
Accounts Payable and Accrued Expenses$435,449$458,828▲ $23,379
Other Liabilities$96,764$76,390▼ $20,374
Deferred Revenue-$17,450-
Total Liabilities$634,715$1,109,314▲ $474,599
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$7,453,058$9,034,708▲ $1,581,650
Net Assets With Donor Restrictions$2,353,127$2,423,402▲ $70,275
Total Net Assets Fund Balance$9,806,185$11,458,110▲ $1,651,925
Total Liabilities and Net Assets / Fund Balance$10,440,900$12,567,424▲ $2,126,524

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$14,267$90,778$105,045
Other Land Buildings$0$16,019$16,019
Investment Program Related Org$850,479--
Other Securities$1,959,008--
Compensation and Service Providers
Top Officer Pay85th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Patricia a FurlongPresident and CEOFT$342,375$41,394$383,769
Kaylan MoitosoChief Business OfficerFT$271,250$31,425$302,675
Rachel SchraderVice President, Clinical Care & EducationFT$174,800$33,557$208,357
Rachel SchraderVice President, Clinical Care & Educ-$161,800$46,557$208,357
Jodi WolffChief Program OfficerFT$194,569$12,395$206,964
Ann MartinVice President, Community Research & Genetic Serv.FT$176,600$16,829$193,429
Ann MartinVice President, Community Research &-$163,600$29,829$193,429

Board Members and Trustees

NameTitle
Gretchen EgnerBoard Chairman
Alpa KhushalaniVice Chair
Colin RenschDirector
Jeffrey BigelowDirector
John KillianDirector
Lance HesterDirector
Maru ChapurDirector
Michelle FurlongDirector
Richard KleinDirector
Scott PerrinDirector
Sue ApkonDirector
Susan HuangDirector
Timothy CripeDirector
David N HofsteinExecutive Committee
Deanne FriarSecretary
Dawn RezkallaTreasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
Omni HotelsMeeting And Conference Services1500 MASTERS BLVD, Davenport, FL 33896$978,891
Sanibel Harbour Marriott Resort And SpaMeeting And Conference Services17260 HARBOUR POINTE DR, Ft Myers, FL 33908$413,775
Faegre Drinker Biddle & Reath LLPLegal And Regulatory Consulting75 REMITTANCE DRIVE DEPT 6952, Chicago, IL 60675$372,956
Uhs Premium BillingHealth InsurancePO BOX 94017, Palatine, IL 60094$311,634
All ColorsMaterials Supplier, Shipping, And Storag425 RARITAN AVENUE, Highland Park, NJ 08904$277,424
Revenue and Support

Revenue Composition

Contributions and Grants
$10,008,956
Program Service Revenue
$2,234,268
Investment Income
$150,586
Other Revenue
$1,917,951
All Other Contributions
$6,792,926
Change in Net Assets
$1,430,359

Noncash Contribution Practices

Property subject to holding requirements
No
Reviewed unusual noncash gifts
Yes
Third parties used for noncash contributions
No

Noncash Contributions

Contribution TypeContribution CountReported AmountValuation Method
Securities Publicly Traded6$580,830Fair Market Value (FMV) on Date of Gift
Total Noncash Contributions6$580,830-

Audited Revenue Reconciliation

Revenue per Audited Statements
$14,311,761
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$221,566
Total Revenue per Audited Statements
$14,533,327
Total Revenue per Form 990
$14,311,761
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$6,141,711
Salaries, Compensation, and Employee Benefits$4,089,108
Grants and Similar Amounts Paid$2,650,583
Total Fundraising Expense$662,951
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$2,582,039$192,317$271,449$3,045,805
Grants to Domestic Orgs$2,464,612--$2,464,612
Fees for Services Other$1,146,523$174,370$48,250$1,369,143
Travel$512,763$5,755$16,689$535,207
All Other Expenses$268,961$80,609$168,261$517,831
Current Officers, Directors, Trustees, and Key Employees$314,564$18,504$37,007$370,075
Other Expenses$103,013$173,839$52,179$329,031
Other Employee Benefits$241,342$20,755$25,704$287,801
Conferences and Meetings$238,835$5,438-$244,273
Payroll Taxes$200,920$17,248$21,393$239,561
Foreign Grants$185,971--$185,971
Fees for Services Legal$86,114$67,177$418$153,709
Pension Plan Contributions$122,338$10,502$13,026$145,866
Occupancy$78,170$2,570$2,086$82,826
Advertising$49,892-$2,003$51,895
Office Expenses$6,065$42,943$191$49,199
Fees for Services Accounting-$22,000-$22,000
Insurance$14,644$5,335$1,559$21,538
Depreciation Depletion$13,121$955$1,397$15,473
Total Functional Expenses$11,374,821$843,630$662,951$12,881,402

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$12,881,402
Total Expenses per Audited Statements$12,881,402
Total Expenses per Form 990$12,881,402
Expenses Not Reported on Financial Statements$0
Expenses Not Reported on Form 990$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
CINCINNATI CHILDREN'S HOSPITAL MCCincinnati, OH501 (c) (3)Research- Action Network Grant$617,000
University of Florida FoundationGainesville, FL-Research - Preclinical Therapeutic Assessment Lab$300,000
University of Rochester Medical CenterRochester, NY-Research - Newborn Screening$210,000
Nyu Langone HealthNew York, NY501 (c) (3)Research - Gene Therapy$200,000
University of FloridaGainesville, FL-Research - Wellstone Supplement$178,500
Critical PathTucson, AZ501 (c) (3)Research - Support of Duchenne Regulatory Science Consortium$100,000
New York UniversityNew York, NY501 (c) (3)Research - Pediatric Therapy Medical Ethics$100,000
Ohio State UniversityColumbus, OH501 (c) (3)Research - Fellowship$84,363
Northwestern UniversityEvanston, IL501 (c) (3)Research - Wellstone Supplement$73,500
NATIONWIDE CHILDREN'S HOSPITALColumbus, OH501 (c) (3)Research - Meeting Support$60,000
University of California BerkeleyBerkley, CA501 (c) (3)Research - Biomarker$57,690
ARKANSAS CHILDREN'S HOSPITALLittle Rock, AR501 (c) (3)Research- Dori Ehr Program$57,603
Ohio State UniversityCincinnati, OH501 (c) (3)Research - Patient Preference$50,000
University of Colorado at DenverAurora, CO501 (c) (3)Research - Dori Ehr Program$50,000
Analysis GroupctapBoston, MAC CorporationResearch- Support of Collective Analysis Trajectory Project$40,000
University of FloridaGainesville, FL-Research - Meeting Support$40,000
Ohio State UniversityColumbus, OH501 (c) (3)Research - Diversity Equity and Inclusion Interviews$28,236
UNIVERISTY OF UTAH PRIMARY CHILDREN'S EHRSalt Lake City, UT-Research - Dori Ehr Program$25,163
CINCINNATI CHILDREN'S HOSPITAL MCCincinnati, OH501 (c) (3)Research- Newborn Screening$25,000
Regents of University of MinnesotaMinneapolis, MN501 (c) (3)Research - Clinical Trials$25,000
The University of IowaIowa City, IA501 (c) (3)Research - Dori Ehr Program$25,000
University of Massachusetts Chan Med SchoolWorcester, MA-Research - Newborn Screening$20,000
Ohio State UniversityCincinnati, OH501 (c) (3)Research - Newborn Screening$19,000
ARKANSAS CHILDREN'S HOSPITALLittle Rock, AR501 (c) (3)Research- Newborn Screening$15,000
Regents of the University of California - LaLos Angeles, CA501 (c) (3)Research - Wellstone Supplement$15,000
Regents of the University of California - LaLos Angeles, CA501 (c) (3)Research - Dmd Molecular and Cellular Dynamics at Single Nuclear Resolution$10,000
VanderbiltNashville, TN-Research - Newborn Screening$10,000
Virginia Tech FoundationBlacksburg, VA-Research - Robotics$7,500
The Nemours FoundationWilmington, DE-Care Program - Award for Maintaining Ppmd Certified Duchenne Care Center Standards$7,273

International Summary

Offices
0
Employees
0
Spending
$185,971

International Compliance

Foreign grant records maintained
No
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
North America - Canada and Mexico, But Not the United StatesGrants to Recipients Located in Region-00$152,910
Europe (including Iceland & Greenland)Grants to Recipients Located in Region-00$33,061
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$387,190
Fundraising Gross Income$106,864
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
SAM'S NIGHT$1,171,207---
Walt Disney World Event$516,972-$55,561-
Total Events$3,322,894$106,864$387,190$-280,326
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Operating Lease Liabilities$76,390
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 2

“Michelle furlong - director is the daughter of patricia furlong ceo, officer”

Form 990, Part VI, Section A, Line 8B

“No committee has authority to act on behalf of the entire board.”

Form 990, Part VI, Section B, Line 11B

“The 990 is completed by an independent cpa firm and a draft is presented to the board members for review. The board then votes to approve the 990 before it is signed and mailed. If there are any comments or questions the issue is resolved prior to filing the 990 with the irs.”

Form 990, Part VI, Section B, Line 12C

“The secretary is responsible to ensure each board member has completed their written statement annually.”

Form 990, Part VI, Section B, Line 15

“Parent project muscular dystrophy ceo compensation review process the president and ceo is the principal representative of the parent project for muscular dystrophy research ("ppmd"), and the person responsible for the efficient operation of the organization. The annual process for determining his/her compensation is as follows: ppmd shall [either the full board or a compensation committee/executive committee] annually evaluate the president and ceo on his/her performance, and ask for his/her input on matters of performance and compensation. Board approval. The board committee will obtain research and information to make a recommendation to the full board for the compensation (salary and benefits) of the president and ceo based on a review of comparability data. This data may include the following: - salary and benefit compensation studies by independent sources; - written job offers for positions at similar organizations; - documented telephone calls about similar positions at both nonprofit and for-profit organizations; and - information obtained from the irs form 990 filings of similar organizations.”

Form 990, Part VI, Section C, Line 19

“AVAILABLE UPON REQUEST.”

Filing and Contact Details

Filer

Filer Name
The Parent Project for Muscular
EIN
31-1405490
Phone
2012508440
Address
1012 14TH STREET NW 500, WASHINGTON, DC 20005

Signing Officer

Name
Patricia a Furlong
Title
Founding President/CEO
Phone
2012508440
Signed
2025-07-28
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Patricia a Furlong
Formed
1997
Legal Domicile
Oh
Voting Board Members
16
Independent Board Members
16
Employees
27
Volunteers
500

Preparer

Firm
James M Wood CPA
Address
603B OMNI DRIVE, HILLSBOROUGH, NJ 08844
Preparer
James M Wood
Phone
9084311700
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 11G

“Consultants: program service expenses 1,146,523. Management and general expenses 174,370. Fundraising expenses 48,250. Total expenses 1,369,143.”

Form 990, Part XII, Line 2C

“The process has not changed from prior year.”

Raw XML AppendixShowing 400 of 1,158 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

Path#Value
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IRS990/AccountsPayableAccrExpnssGrp/EOYAmt0458828
IRS990/ActivitiesConductedPrtshpInd00
IRS990/ActivityOrMissionDesc0END DUCHENNE MUSCULAR DYSTROPHY THROUGH RESEARCH, ADVOCACY, EDUCATION, & OPTIMAL MEDICAL CARE.
IRS990/AdvertisingGrp/FundraisingAmt02003
IRS990/AdvertisingGrp/ProgramServicesAmt049892
IRS990/AdvertisingGrp/TotalAmt051895
IRS990/AllOtherContributionsAmt06792926
IRS990/AllOtherExpensesGrp/FundraisingAmt0168261
IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt080609
IRS990/AllOtherExpensesGrp/ProgramServicesAmt0268961
IRS990/AllOtherExpensesGrp/TotalAmt0517831
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IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt01012 14TH STREET NW 500
IRS990/BooksInCareOfDetail/USAddress/CityNm0WASHINGTON
IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd0DC
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IRS990/CompensationProcessOtherInd01
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IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/AddressLine1Txt3PO BOX 94017
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IRS990/ContractorCompensationGrp/ContractorName/BusinessName/BusinessNameLine1Txt1SANIBEL HARBOUR MARRIOTT RESORT AND SPA
IRS990/ContractorCompensationGrp/ContractorName/BusinessName/BusinessNameLine1Txt2FAEGRE DRINKER BIDDLE & REATH LLP
IRS990/ContractorCompensationGrp/ContractorName/BusinessName/BusinessNameLine1Txt3UHS PREMIUM BILLING
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IRS990/ContractorCompensationGrp/ServicesDesc2LEGAL AND REGULATORY CONSULTING
IRS990/ContractorCompensationGrp/ServicesDesc3HEALTH INSURANCE
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IRS990/Desc0RESEARCHPPMD'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 PRE-COMPETITIVE 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 REGISTRYESTABLISHED IN 2007, THE DUCHENNE REGISTRY IS THE LARGEST PATIENT-REPORTED DATA REPOSITORY FOR INDIVIDUALS LIVING WITH DUCHENNE AND BECKER MUSCULAR DYSTROPHY AND CARRIER FEMALES. WITH PARTICIPATION FROM OVER 6,000 FAMILIES WORLDWIDE, THE REGISTRY HELPS BRIDGE INFORMATION GAPS BETWEEN FAMILIES, CLINICIANS, AND RESEARCHERS. IT HAS CONTRIBUTED TO 14 PEER-REVIEWED PUBLICATIONS AND SUPPORTED OVER 85 CLINICAL TRIALS THROUGH TARGETED OUTREACH.PPMD ALSO MANAGES COMPLEMENTARY INITIATIVES:-THE DUCHENNE OUTCOMES RESEARCH INTERCHANGE (THE INTERCHANGE) AGGREGATES PATIENT- AND CLINICIAN-REPORTED DATA TO PROVIDE A COMPREHENSIVE VIEW OF THE LIVED EXPERIENCE OF DUCHENNE, SUPPORTING REAL-WORLD EVIDENCE GENERATION.- THE ELECTRONIC HEALTH RECORD (EHR) STUDY EXTRACTS DE-IDENTIFIED CLINICAL DATA FROM CERTIFIED DUCHENNE CARE CENTERS TO IMPROVE CARE AND INFORM RESEARCH WITHOUT ADDING BURDEN TO PATIENTS OR PROVIDERS.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.
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IRS990/Form990PartVIISectionAGrp/TitleTxt16PRESIDENT AND CEO
IRS990/Form990PartVIISectionAGrp/TitleTxt17CHIEF BUSINESS OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt18CHIEF PROGRAM OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt19VICE PRESIDENT, COMMUNITY RESEARCH & GENETIC SERV.
IRS990/Form990PartVIISectionAGrp/TitleTxt20VICE PRESIDENT, CLINICAL CARE & EDUCATION
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IRS990/MissionDesc0THE 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.
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