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Parent Project Muscular Dystrophy
Parent Project Muscular Dystrophy (PPMD) was founded in 1994 by Pat Furlong following the deaths of her sons Christopher and Patrick from Duchenne...
Parent Project Muscular Dystrophy
Parent Project Muscular Dystrophy (PPMD) was founded in 1994 by Pat Furlong following the deaths of her sons Christopher and Patrick from Duchenne muscular dystrophy. The organization began as a small parent-led advocacy group and has grown into a centralized nonprofit driving research and care standards for Duchenne and Becker muscular dystrophy (per PPMD, 2024). PPMD's strategy spans basic research funding, clinical trial support, and direct family services. The foundation has committed over $500 million to Duchenne research since inception, supporting more than 400 research projects and multiple clinical-stage therapies (per PPMD, 2025). Asset allocation includes grants, venture philanthropy investments in biotech companies such as Sarepta Therapeutics and Pfizer-partnered gene therapy programs, and operational funding from donations and events. Geographic footprint is primarily US-centric, with some international research collaborations in Europe and Australia. PPMD employs a professional staff of approximately 50 in its Hackensack, New Jersey headquarters, supplemented by a national network of parent advocates and medical advisory board members. Key initiatives include the Certified Duchenne Care Center program, which has accredited over 40 clinical sites. In 2025, the organization approved a new strategic plan emphasizing gene therapy access and newborn screening expansion (per PPMD, 2025). Unlike many disease foundations, PPMD operates with a venture-philanthropy model that directly engages with biotech and pharma partners to accelerate drug development. The organization co-invests in preclinical research and advocates for regulatory flexibility at the FDA, maintaining a governance structure led by a board predominantly composed of family members affected by Duchenne.
General information
Firm type
Foundation
Year founded
1994
AUM
Undisclosed
Location
Region
North America
Country
United States
City
Hackensack
Corporate office
Hackensack, NJ, United States
Principals
Pat Furlong
Founding President and CEO
Ryan Fischer
Chief Executive Officer
Sector focus
Frequently asked questions
Who leads investment decisions at Parent Project Muscular Dystrophy?
PPMD's research funding decisions are managed by a professional team led by CEO Ryan Fischer, with scientific oversight from the PPMD Translational Research Advisory Committee comprising academic and industry experts (per PPMD, 2026). Pat Furlong founded the organization and continues in a strategic role.
Does Parent Project Muscular Dystrophy function like a venture capital firm or a traditional foundation?
PPMD operates as a hybrid venture-philanthropy organization. It awards traditional grants for basic research and also makes strategic investments in biotech companies developing Duchenne therapies, often taking board seats or advisory roles in portfolio companies such as Sarepta Therapeutics and its gene therapy partners (per PPMD, 2025).
What investment stages does PPMD typically target?
PPMD funds preclinical research through early-stage drug development and clinical trials, with emphasis on therapies that have advanced to human testing. The organization has supported programs from discovery through FDA approval, including exon-skipping drugs and gene therapy (per PPMD, 2025).
Which sectors does PPMD explicitly avoid?
PPMD exclusively funds research and programs related to Duchenne and Becker muscular dystrophy. It does not invest in unrelated therapeutic areas, general infrastructure, or non-muscular-dystrophy conditions (per PPMD, 2024).
How is PPMD's research investment performance measured?
PPMD tracks the number of therapies advanced to clinical trials, FDA approvals achieved, and improvements in patient outcomes. Since 2014, multiple drugs developed with PPMD support have received FDA approval, including eteplirsen (Exondys 51) and delandistrogene moxeparvovec (Elevidys) (per FDA, 2023).
What is PPMD's geographic focus for research investments?
The majority of PPMD's funding supports US-based research institutions and companies, but the foundation also collaborates with European and Australian researchers through its global Duchenne network. Clinical trials funded by PPMD have enrolled patients across North America, Europe, and Australia (per PPMD, 2025).
Does PPMD maintain philanthropic structures separate from its research programs?
PPMD operates as a 501(c)(3) nonprofit with all programs under one organizational umbrella. Additionally, the organization runs the PPMD Family Support Program and the PPMD Advocacy Program, both funded by donations and grants separate from research allocations (per PPMD, 2024).
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