The Parent Project For Muscular Dystrophy Research Inc

Organization Overview

The Parent Project For Muscular Dystrophy Research Inc is located in Washington, DC. The organization was established in 1994. According to its NTEE Classification (P20) the organization is classified as: Human Service Organizations, under the broad grouping of Human Services and related organizations. As of 12/2021, Parent Project For Muscular Dystrophy Research Inc employed 19 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Parent Project For Muscular Dystrophy Research Inc is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 12/2021, Parent Project For Muscular Dystrophy Research Inc generated $10.9m in total revenue. This represents relatively stable growth, over the past 7 years the organization has increased revenue by an average of 3.3% each year. All expenses for the organization totaled $7.8m during the year ending 12/2021. While expenses have increased by 0.3% per year over the past 7 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.

Since 2015, Parent Project For Muscular Dystrophy Research Inc has awarded 258 individual grants totaling $21,158,995. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2021

Describe the Organization's Mission:

Part 3 - Line 1

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

Describe the Organization's Program Activity:

Part 3 - Line 4a

RESEARCHPPMD'S RESEARCH PROGRAM IDENTIFIES AND AGGRESSIVELY FUNDS THE MOST PROMISING NEAR AND LONG-TERM DUCHENNE RESEARCH ACROSS NUMEROUS THERAPEUTIC STRATEGIES; STIMULATES NEW RESEARCH TO ENSURE THAT THE THERAPEUTIC PIPELINE IS RICH WITH OPPORTUNITY; FACILITATES PRE-COMPETITIVE INDUSTRY INTERACTIONS THROUGH THE DUCHENNE DRUG DEVELOPMENT ROUNDTABLE TO ENHANCE AND HARMONIZE THE CLINICAL TRIAL LANDSCAPE; AND SUPPORTS MULTI-STAKEHOLDER DATA MODELLING CONSORTIA TO ACCELERATE DRUG DEVELOPMENT TIMELINES. IN ADDITION TO SIGNIFICANT PRE-CLINICAL AND ACADEMIC RESEARCH FUNDING, PPMD MAKES INVESTMENTS IN EARLY-STAGE BIOPHARMACEUTICAL COMPANIES TO CATALYZE DEVELOPMENT OF NOVEL THERAPIES TO TREAT DUCHENNE AND BECKER. THE DUCHENNE REGISTRYTHE DUCHENNE REGISTRY IS A PATIENT-REPORTED REGISTRY FOR INDIVIDUALS WITH DUCHENNE AND BECKER MUSCULAR DYSTROPHY AND CARRIER FEMALES. ESTABLISHED BY PPMD IN 2007, THE REGISTRY WAS CREATED TO BRIDGE THE INFORMATION GAP BETWEEN CLINICIANS, RESEARCHERS, AND THE PATIENT COMMUNITY, THEREBY ADDRESSING MEDICAL CARE NEEDS AND ACCELERATING THE PACE OF THERAPEUTIC ADVANCEMENTS. OVER 5,000 FAMILIES ACROSS THE GLOBE HAVE EMBRACED THEIR ROLE AS CITIZEN SCIENTISTS AND HAVE CONTRIBUTED TO THE LARGEST PATIENT-REPORTED DATA SET FOR DUCHENNE. CAREPPMD'S CARE PROGRAM STRIVES TO ENSURE THAT PEOPLE LIVING WITH DUCHENNE ARE LIVING LONGER, STRONGER LIVES, BY HELPING PROVIDE ACCESS TO EXPERT HEALTHCARE PROVIDERS, A COMPREHENSIVE TEAM OF SUB-SPECIALISTS, AND APPROVED TREATMENTS. PPMD IDENTIFIES GAPS IN CARE FOR PEOPLE WITH DUCHENNE THROUGHOUT THE LIFESPAN AND COLLABORATES WITH HEALTH CARE PROFESSIONALS ACROSS THE GLOBE TO IMPROVE HEALTH OUTCOMES FOR ALL DUCHENNE PATIENTS. PPMD'S CERTIFIED DUCHENNE CARE CENTER PROGRAM (CDCC) HELPS TO ENSURE THAT CENTERS COMPLY WITH THE STANDARDS OF CARE AND SERVICES THAT HAVE BEEN ESTABLISHED IN THE DUCHENNE CARE GUIDELINES. ALL CERTIFIED DUCHENNE CARE CENTERS HAVE MET THE REQUIREMENTS FOR, AND AGREE TO PROVIDE, STANDARDIZED CARE AND SERVICES.


EDUCATIONPPMD'S EDUCATION INITIATIVES INCREASE AWARENESS AND UNDERSTANDING OF THE DISEASE PROGRESSION AND THE COMPONENTS OF MULTIDISCIPLINARY COMPREHENSIVE CARE NECESSARY TO OPTIMIZE QUALITY AND QUANTITY OF LIFE THROUGHOUT THE LIFESPAN. PPMD PARTNERS WITH EXPERTS IN DUCHENNE TO DEVELOP UP-TO-DATE INFORMATIONAL RESOURCES REGARDING TREATMENT AND CARE THAT WE THEN SHARE BROADLY. PPMD COLLABORATES WITH NATIONAL AND INTERNATIONAL ORGANIZATIONS TO DEVELOP AND DISSEMINATE EDUCATIONAL RESOURCES APPROPRIATE FOR THE GLOBAL DUCHENNE COMMUNITY.


ADVOCACYPPMD'S ADVOCACY EFFORTS ARE FOCUSED ON ADVANCING CARE AND TREATMENTS FOR DUCHENNE BY LEVERAGING FEDERAL RESOURCES, BUILDING PARTNERSHIPS, AND ADVANCING REGULATORY PROCEDURES AND INFRASTRUCTURE. WE EMPOWER ADVOCATES WITH THE TOOLS AND INFORMATION TO ENGAGE WITH CONGRESSIONAL REPRESENTATIVES TO FOSTER DUCHENNE CHAMPIONS WITHIN CONGRESS AND TO SUPPORT LEGISLATION AND REGULATORY POLICIES, ENSURING THAT DUCHENNE PRIORITIES ARE REFLECTED ACROSS ALL GOVERNMENT AGENCIES.


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Outside Vendors & Contractors

Vendor Name (Service)Compensation
John R Dudley Productions Llc
A/v And Production Services
$206,116
Prometheus Research Llc
Database/ Information Technology Service
$204,428
Your Part-time Controller
Financial Consulting Services
$186,960
Faegre Drinker Biddie & Reath Llp
Legal And Regulatory Consulting
$185,068
United Health Care
Health Insurance
$126,145
View All Vendors

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$2,050,953
Related organizations$0
Government grants $447,660
All other contributions, gifts, grants, and similar amounts not included above$7,956,115
Noncash contributions included in lines 1a–1f $720,702
Total Revenue from Contributions, Gifts, Grants & Similar$10,454,728
Total Program Service Revenue$485,989
Investment income $49,538
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales $4,068
Net Income from Fundraising Events -$138,175
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $10,856,558

Grants Awarded

Over the last fiscal year, The Parent Project For Muscular Dystrophy Research Inc has awarded $2,239,078 in support to 22 organizations.

Grant RecipientAmount

HEALTH RESEARCH INC

Org PageRecipient Profile

Menands, NY

PURPOSE: RESEARCH- NYS NEWBORN SCREENING PILOT

$450,000

UNIVERSITY OF FLORIDA FOUNDATION

Org PageRecipient Profile

Gainesville, FL

PURPOSE: RESEARCH PROGRAM- CARIDIAC INITIATIVE AND BIOBANK SUPPORT

$368,927

UNIVERSITY OF FLORIDA

Org PageRecipient Profile

Gainesville, FL

PURPOSE: RESEARCH PROGRAM- WELLSTONE SUPPLEMENT

$263,693

RESEARCH FOUNDATION FOR SUNY

Org PageRecipient Profile

Albany, NY

PURPOSE: RESEARCH PROGRAM- GENE THERAPY INITIATIVE

$226,450

OHIO STATE UNIVERSITY

Org PageRecipient Profile

Columbus, OH

PURPOSE: RESEARCH PROGRAM- CARDIAC INITIATIVE (GENE EDITING TO CORRECT HEART FUNCTION)

$121,644

NORTHWESTERN UNIVERSITY

Org PageRecipient Profile

Evanston, IL

PURPOSE: RESEARCH PROGRAM- CARDIAC INITIATIVE

$120,000
View Grant Profile

Grants Recieved

Over the last fiscal year, we have identified 23 grants that The Parent Project For Muscular Dystrophy Research Inc has recieved totaling $669,895.

Awarding OrganizationAmount
Schwab Charitable Fund

San Francisco, CA

PURPOSE: HUMAN SERVICES

$271,959
Smidt Fam Foundation

Newbury Park, CA

PURPOSE: IN FURTHERANCE OF SECTION 501(C)(3) CHARITABLE PURPOSE.

$100,000
American Online Giving Foundation Inc

Newark, DE

PURPOSE: GENERAL SUPPORT

$94,756
Foundation To Eradicate Duchenne Inc

Alexandria, VA

PURPOSE: FUND RESEARCH FOR TREATMENT OF DUCHENNE MUSCULAR DYSTROPHY

$50,000
Columbus Foundation

Columbus, OH

PURPOSE: HEALTH

$36,000
Team Joseph Inc

West Bloomfield, MI

PURPOSE: RESEARCH PROTEIN MAPPING

$25,000
View Grant Recipient Profile

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