Director, State Advocacy: Remote Nonprofit Leadership Opportunity with Parent Project Muscular Dystrophy|Salary up to $120k

Overview

Parent Project Muscular Dystrophy (PPMD) is hiring a Director, State Advocacy. PPMD is a patient organization dedicated exclusively to Duchenne and Becker muscular dystrophy, working across advocacy, care, education and research and maintaining a major global Duchenne patient registry. A key priority is expanding newborn screening for Duchenne across all 50 U.S. states, the District of Columbia and U.S. territories. The position is fully remote within the United States and pays $100,000 to $120,000 per year.

The role

The Director supports PPMD's state and federal advocacy agenda and takes primary responsibility for state-based strategies. A central duty is leading PPMD's work in the Duchenne Newborn Screening Implementation Collaborative, coordinating stakeholders, working groups, state action plans and progress tracking. The Director monitors legislation, regulations and public health policy, builds relationships with legislators, health departments, laboratories, clinicians, researchers and families, represents PPMD at legislative meetings and forums, supports grassroots campaigns, forms bipartisan coalitions around newborn screening, rare disease, disability and healthcare access, and turns research and technical data into clear information for policymakers. The role works with the Care, Research, Registry/Genetics, Communications and Community Engagement teams.

Requirements

A bachelor's degree in public administration, public policy, government studies or a related field is required, and a master's such as an MPA or MPP is preferred. Applicants need at least two years of state-level advocacy or public policy experience, ideally with state legislatures, health departments or regulatory processes. Experience with grassroots campaigns, coalition building, project management, state public health systems, stakeholder engagement and Microsoft Office and Google Workspace is sought. Experience with newborn screening, Duchenne or other neuromuscular conditions, or multi-state projects is an advantage. Candidates should work independently and manage several projects with care.

What you get

The national remote salary range is $100,000 to $120,000, with the higher end reserved for candidates living in premier cost-of-living metropolitan markets. Travel of about 15 percent is expected, including legislative, community and educational meetings.

How to apply

Applicants must have valid authorization to work in the United States. They submit an application, including a resume in PDF format, through the official job listing. No deadline is stated.