Parent Project Muscular Dystrophy
- Company typePrivate
- Founded1994
- HeadquartersWashington, United States
- Headcount11–50
- GTM typeB2B and B2C
- OfferingServices
Parent Project Muscular Dystrophy firmographics
Firmographics- Name
- Parent Project Muscular Dystrophy
- Legal name
- The Parent Project for Muscular Dystrophy Research Inc
- Website
- https://parentprojectmd.org
- Company type
- Private
- Founded year
- 1994
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Ownership category
- akta.pro rank
Where Parent Project Muscular Dystrophy is headquartered
LocationHeadquarters
- HQ city
- Washington
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
Parent Project Muscular Dystrophy business model
Business model- GTM type
- B2B and B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Others, Infrastructure
Revenue model
- Donations and Fundraising: PPMD generates revenue through donations from individuals, corporate sponsors, and fundraising events including the Race to End Duchenne program (raised over $19 million since 2005), Sam's Night event (raised over $10 million since inception), and DIY Fundraising initiatives.
- Venture Philanthropy Grants: PPMD provides funding to biotech companies through its Venture Pathways program, which functions as venture philanthropy to accelerate therapeutic development for Duchenne. Examples include $250,000 to Secretome Therapeutics and $400,000 to MyoGene Bio.
Go-to-market motion1 record
Distribution channels3 records
Marketing channels8 records
Parent Project Muscular Dystrophy product offering
Product offeringCore offering
PPMD is a nonprofit patient advocacy organization that accelerates research, care, and policy to end Duchenne and Becker muscular dystrophy. It runs The Duchenne Registry (a patient-powered data network), funds biotech companies through the Venture Pathways venture-philanthropy program, certifies care centers, provides free genetic testing via Decode Duchenne, publishes care guidelines, and hosts the world's largest Duchenne annual conference alongside advocacy and community support programs for affected families.
Product overview
Parent Project Muscular Dystrophy operates as a nonprofit patient advocacy organization rather than a commercial product company. Its core offering is The Duchenne Registry, a patient-powered data network that collects longitudinal information from individuals with Duchenne and Becker muscular dystrophy. Supporting programs include the Venture Pathways venture-philanthropy initiative, the Certified Duchenne Care Center Program ensuring standardized comprehensive care, the interactive Duchenne Drug Development Pipeline documenting therapies in development, and the Decode Duchenne free genetic testing program. Additional resources include Duchenne Care Guidelines, emergency care protocols, educational webinars, the Living Duchenne Podcast, and community connection programs. The organization's fundraising efforts include the Race to End Duchenne endurance program and annual events. PPMD's impact includes over $55 million invested in research, 10 years of average lifespan extension attributed to care advances, and $850 million in leveraged federal funding.
Differentiator
Problem solved
Functional benefit
Products and services
- The Duchenne Registry A patient-powered data network collecting longitudinal information from individuals with Duchenne and Becker muscular dystrophy and female carriers. The registry has operated for over 10 years, with anonymous data shared with researchers to speed therapy development, support clinical trial recruitment, and improve understanding of disease progression.
- PPMD Venture Pathways A venture-philanthropy funding initiative that provides capital to biotech companies developing Duchenne and Becker muscular dystrophy therapies, including gene editing platforms and cardiac cell therapies. Examples include $250,000 to Secretome Therapeutics for STM-01 cardiac cell therapy and $400,000 to MyoGene Bio for a gene editing therapy.
- Certified Duchenne Care Center Program An accreditation program that ensures hospitals and clinics provide comprehensive Duchenne care in agreement with CDC Care Considerations. Hospitals apply to be designated as Certified Duchenne Care Centers, strengthening the national network of specialized Duchenne care providers.
- Decode Duchenne Free Genetic Testing Program A free genetic testing and counseling program for individuals with Duchenne and Becker muscular dystrophy, designed to identify genetic variants and inform treatment decisions.
- Duchenne Care Guidelines Comprehensive care guidelines covering cardiac, pulmonary, bone/joint, emergency, and other areas of Duchenne management, organized by area of care and stage of disease progression. Includes emergency care and surgery/anesthesia precautions for clinicians and families.
- Duchenne Drug Development Pipeline An interactive pipeline documenting potential Duchenne treatments in development, including therapeutic approaches that restore or replace dystrophin and those that treat symptoms such as muscle protection and fibrosis reduction.
- Race to End Duchenne PPMD's signature endurance fundraising program involving marathons and races that has raised more than $19 million since 2005 to support Duchenne research, care, and advocacy.
- Sam's Night Fundraising Event An annual fundraising gala for PPMD, first held in 2017 and celebrating its 20th anniversary in 2025, having raised more than $10 million since inception.
- Annual Duchenne Conference The world's largest gathering for the Duchenne and Becker community, with the 32nd iteration scheduled for June 2026 in Orlando, Florida, expecting more than 1,000 attendees including families, researchers, clinicians, and industry partners.
- PPMD Advocacy Conference An annual advocacy event bringing 120+ Duchenne advocates to Capitol Hill to promote federal policies supporting Duchenne research, care, and advocacy.
- Living Duchenne Podcast A podcast series providing educational content and community stories for families affected by Duchenne muscular dystrophy.
Companies that use Parent Project Muscular Dystrophy
Customer profileNamed customers1 record
Segments4 records
Ideal customer profiles3 records
Parent Project Muscular Dystrophy technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Parent Project Muscular Dystrophy partnerships and signals
Strategic signalPartnerships
Four partnerships are on record, tiered core.
- Mesoblast LimitedcoreMesoblast is collaborating with PPMD to support patient identification and trial awareness for its FDA-cleared registrational clinical trial evaluating Ryoncil in pediatric DMD patients. PPMD helps connect eligible patients with the trial.
- Cooperative International Neuromuscular Research Group (CINRG)corePPMD partnered with CINRG to advance the expanded Duchenne Natural History Study (eDNHS), gathering long-term data on disease progression to facilitate therapy development and improve clinical practices. The study is active and enrolling at ten sites worldwide across North America, Australia, and India.
- University of California, DaviscoreUC Davis is the sponsor of the expanded Duchenne Natural History Study (eDNHS) and serves as a principal investigation site for this global long-term observational study.
- Broad InstitutecorePPMD organized a symposium at the Broad Institute bringing together researchers, companies, and FDA officials to address challenges in conducting AAV gene therapy clinical trials in seropositive patients with pre-existing antibodies.
Scale indicators10 records
Recent moves6 records
Expansion highlights5 records
Parent Project Muscular Dystrophy competitors and assessment
Company assessmentDirect peers
- Muscular Dystrophy Association: The largest U.S. muscular dystrophy nonprofit, covering Duchenne, Becker, and many other neuromuscular diseases. Directly comparable to PPMD as a patient advocacy, research funding, and care guidelines organization, though broader in disease scope and historically larger in fundraising scale.
- Cure Duchenne: A disease-specific nonprofit focused exclusively on finding a cure for Duchenne muscular dystrophy. Closely comparable to PPMD in mission, venture philanthropy funding of biotechs, and patient registry operations, though smaller in scale.
- Jett Foundation: A Duchenne muscular dystrophy-focused nonprofit providing patient support, fundraising, and research funding. Comparable to PPMD in disease focus and patient-family services, though with a smaller national footprint.
- Charley's Fund: A venture philanthropy nonprofit focused on funding Duchenne muscular dystrophy research and therapeutic development. Comparable to PPMD's Venture Pathways in approach and mission, though smaller in scale and assets.
Broad incumbents
- Cystic Fibrosis Foundation: The archetypal disease-focused venture philanthropy nonprofit, credited with funding development of transformative CF therapies. Comparable to PPMD as a model for patient advocacy organizations funding biotech R&D and driving care standards, though operating in a different (and now better-funded) disease area.
- National Organization for Rare Disorders (NORD): A U.S. umbrella organization serving as the collective voice for the rare disease community on policy, research funding, and patient access. Comparable to PPMD on the policy advocacy dimension, though NORD's multi-disease scope makes it more of an ecosystem partner than a direct competitor.
Regional players
- Action Duchenne: A UK-based Duchenne muscular dystrophy charity providing patient advocacy, research funding, and community support. Comparable to PPMD in mission and program mix, but operating primarily in the United Kingdom and not directly competing in U.S. territory.
Others
- Parent to Parent USA: A national nonprofit connecting parents of children with disabilities for peer support. Comparable to PPMD's community support and Connect Groups model, though not disease-specific and focused on peer matching rather than research funding.
- EveryLife Foundation for Rare Diseases: A rare disease policy advocacy organization focused on accelerating biotech innovation and patient access. Comparable to PPMD on federal advocacy (FDA, NIH, Congressional engagement), though focused broadly across rare diseases.
- Parent Heart Watch: A national nonprofit focused on preventing sudden cardiac arrest in youth through awareness, screening, and advocacy. Comparable to PPMD in the parent-led patient advocacy nonprofit model and focus on cardiac complications of genetic disease (cardiomyopathy is the leading cause of death in Duchenne).
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks5 records
Key highlights7 records
Customer concentration
Parent Project Muscular Dystrophy social profiles
Digital presenceParent Project Muscular Dystrophy financial estimates
Financial estimateRevenue estimate
Valuation estimate
Parent Project Muscular Dystrophy leadership team
Management profileNumber of profiles
Profiles2 records
Parent Project Muscular Dystrophy subsidiaries and ownership
Company hierarchySubsidiaries2 records
Parent Project Muscular Dystrophy funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Parent Project Muscular Dystrophy M&A and investment
M&A and investmentM&A
Investments12 records
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Parent Project Muscular Dystrophy
What does Parent Project Muscular Dystrophy do?
PPMD is a nonprofit patient advocacy organization that accelerates research, care, and policy to end Duchenne and Becker muscular dystrophy. It runs The Duchenne Registry (a patient-powered data network), funds biotech companies through the Venture Pathways venture-philanthropy program, certifies care centers, provides free genetic testing via Decode Duchenne, publishes care guidelines, and hosts the world's largest Duchenne annual conference alongside advocacy and community support programs for affected families.
Is Parent Project Muscular Dystrophy a public or private company?
Parent Project Muscular Dystrophy is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Parent Project Muscular Dystrophy founded?
Parent Project Muscular Dystrophy was founded in 1994. It employs 11 to 50 people.
Where is Parent Project Muscular Dystrophy based?
Parent Project Muscular Dystrophy is headquartered in Washington, United States, in the North America region.
How does Parent Project Muscular Dystrophy make money?
Two revenue lines are on record. Donations and Fundraising is the primary driver. The others are venture Philanthropy Grants.
Who are Parent Project Muscular Dystrophy's main competitors?
Direct peers on record are Muscular Dystrophy Association, Cure Duchenne, Jett Foundation and Charley's Fund. Broad incumbents are Cystic Fibrosis Foundation and National Organization for Rare Disorders (NORD). Action Duchenne is listed as a regional player. Others are Parent to Parent USA, EveryLife Foundation for Rare Diseases and Parent Heart Watch.
Does Parent Project Muscular Dystrophy have an API?
No public API is recorded for Parent Project Muscular Dystrophy.