The Parent Project For Muscular Dystrophy Research Inc
The Parent Project For Muscular Dystrophy Research Inc
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About this organization
Mission
Parent Project Muscular Dystrophy’s mission is to end Duchenne. We accelerate research, raise our voices in Washington, demand optimal care for all young men, and educate the global community.
About
RESEARCHPPMD'S RESEARCH INITIATIVE IDENTIFIES AND AGGRESSIVELY FUNDS THE MOST PROMISING NEAR AND LONG-TERM DUCHENNE RESEARCH AND CUTTING-EDGE THERAPIES; 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.THE DUCHENNE REGISTRYTHE DUCHENNE REGISTRY IS A PATIENT-REPORTED REGISTRY FOR INDIVIDUALS WITH DUCHENNE AND BECKER MUSCULAR DYSTROPHY AND CARRIER FEMALES. ESTABLISHED BY PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH 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 INITIATIVE 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 THROUGH ACCESS TO STANDARDIZED CARE VIA THE CERTIFIED DUCHENNE CARE CENTER PROGRAM.
Interesting data from their 2020 990 filing
The filing clearly states the mission of the non-profit as “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.”.
When outlining its functions, they were explained as: “End duchenne muscular dystrophy through research, advocacy, education, & optimal medical care.”.
- In compliance with legal regulations, the non-profit has reported their state of operation as OH.
- The filing records the non-profit's address for 2020 as 401 HACKENSACK AVENUE 9TH FLOOR, HACKENSACK, NJ, 07601.
- As of 2020, the non-profit's form reports a total of 26 employees.
- Is not a private foundation.
- Expenses are greater than $1,000,000.
- Revenue is greater than $1,000,000.
- Revenue less expenses is $582,679.
- The organization has 15 independent voting members.
- The organization was formed in 1997.
- The organization pays $3,127,518 in salary, compensation, and benefits to its employees.
- The organization pays $780,442 in fundraising expenses.