Director, State Advocacy: Remote Nonprofit Leadership Opportunity with Parent Project Muscular Dystrophy|Salary up to $120k
Are you an experienced public policy, advocacy, or nonprofit professional looking for a remote leadership opportunity in the United States? Parent Project Muscular Dystrophy (PPMD) is seeking a Director, State Advocacy to help advance policies that improve diagnosis, care, treatment access, and quality of life for individuals and families affected by Duchenne and Becker muscular dystrophy.
The position is fully remote within the United States and offers a competitive annual salary of $100,000–$120,000, making it an attractive opportunity for professionals with experience in state-level advocacy, public policy, grassroots organizing, and stakeholder engagement.
About Parent Project Muscular Dystrophy
Parent Project Muscular Dystrophy is a leading patient organization dedicated exclusively to Duchenne and Becker muscular dystrophy. The organization works across advocacy, care, education, and research while maintaining a major global Duchenne patient registry.
A major priority for PPMD is expanding newborn screening (NBS) for Duchenne. The organization is working to support implementation of newborn screening across all 50 U.S. states, the District of Columbia, and U.S. territories.
The Director, State Advocacy will play a central role in this effort.
About the Director, State Advocacy Role
The Director will support PPMD’s broader state and federal advocacy agenda while taking primary responsibility for developing and implementing state-based advocacy strategies.
A major component of the position will be serving as PPMD’s lead for the Duchenne Newborn Screening Implementation Collaborative. The successful candidate will coordinate stakeholders, working groups, state implementation efforts, action plans, and progress tracking.
The role involves working with a wide range of stakeholders, including state legislators, government officials, public health departments, newborn screening programs, laboratories, clinicians, researchers, advocacy organizations, patients, and families.
The Director will also monitor legislation, regulations, public health policies, and government affairs developments that could affect the Duchenne and Becker community.
Key Responsibilities
The successful candidate will be responsible for a broad range of advocacy and project-management activities, including:
- Developing and implementing state-level advocacy strategies.
- Monitoring state legislation, regulations, and public health policies.
- Building relationships with legislators, policymakers, health departments, clinicians, and advocacy partners.
- Representing PPMD at legislative meetings, conferences, workshops, and public health forums.
- Supporting grassroots advocacy campaigns involving patients, families, and community champions.
- Building bipartisan coalitions around newborn screening, rare disease, disability, healthcare access, and reimbursement issues.
- Managing advocacy workplans, timelines, stakeholder lists, and legislative activity.
- Coordinating the Duchenne Newborn Screening Implementation Collaborative.
- Supporting education and outreach concerning Duchenne newborn screening.
- Translating research, data, and technical information into clear information for policymakers and other audiences.
- Collaborating with PPMD’s Care, Research, Registry/Genetics, Communications, and Community Engagement teams.
This is therefore a strategic role combining policy advocacy, project management, communications, research interpretation, coalition building, and community engagement.
Who Can Apply?
PPMD requires a bachelor’s degree in public administration, public policy, government studies, or a related field. A master’s degree such as an MPA, MPP, or equivalent is preferred.
Applicants should have at least two years of state-level advocacy and/or public policy experience, particularly experience navigating state legislatures, health departments, or regulatory processes.
The organization is also looking for candidates with experience in:
- Grassroots campaign leadership
- Coalition building
- Public policy advocacy
- Project management
- State public health systems
- Stakeholder engagement
- Written and verbal communication
- Microsoft Office and Google Workspace
Candidates should be comfortable working independently and managing multiple projects with attention to detail.
Experience with newborn screening, Duchenne or other neuromuscular conditions, clinical programs, or multi-state project management would be an advantage.
Salary and Remote Work
The position offers a national remote salary range of $100,000–$120,000 per year. PPMD notes that the higher end of the salary range is reserved for candidates living in premier cost-of-living metropolitan markets.
The position requires approximately 15% travel, including occasional state legislative, community, and educational meetings.
Importantly, applicants must have valid authorization to work in the United States. Although the position is advertised as remote, it is not presented as an international remote position.
Why This Opportunity Stands Out
This role could be particularly appealing to an experienced advocacy or public policy professional who wants to combine government affairs with meaningful social impact.
The successful candidate will have an opportunity to influence state policy, coordinate national implementation efforts, strengthen partnerships, and contribute to initiatives designed to improve early diagnosis and healthcare outcomes for families affected by Duchenne and Becker muscular dystrophy.
For qualified U.S.-based candidates, the combination of remote work, nonprofit leadership, policy advocacy, and a $100,000–$120,000 salary range makes this a noteworthy opportunity.
How to Apply
The Director, State Advocacy position is listed on Idealist by Parent Project Muscular Dystrophy. Applicants should review the complete requirements and submit their application, including a resume in PDF format, through the official job listing.
View the Director, State Advocacy opportunity on Idealist
Job Type: Full Time
Work Arrangement: Remote — United States
Salary: $100,000–$120,000 per year
Education: Bachelor’s degree required; master’s preferred
Experience: At least 2 years of state-level advocacy/public policy experience
Travel: Approximately 15%
Work Authorization: U.S. work authorization required
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