Director, State Advocacy

Company Background/Culture:

Parent Project Muscular Dystrophy (PPMD) is the country’s largest patient organization focused exclusively on Duchenne and Becker muscular dystrophy. Through comprehensive Advocacy, Care, Education, Research programs and the largest global Duchenne patient registry, PPMD accelerates research, impacts local and federal policy, demands optimal care for all families, and strives to ensure access to approved therapies. In December 2025, Duchenne muscular dystrophy (Duchenne) was added to the Recommended Universal Screening Panel (RUSP), an achievement driven by the community’s commitment to building the research, advocacy and care eco-system over decades. A current priority is the implementation of newborn screening for Duchenne in all 50 states.

Position Summary:

The Director, State Advocacy (The Director) provides critical, multi-faceted support to PPMD’s advocacy and public policy efforts, with direct responsibility for key programs, projects, and initiatives, as well as cross-functional collaborations across the organization. The Director will champion initiatives that advance PPMD’s federal and state advocacy priorities, with a particular focus on newborn screening (NBS) implementation and the development and execution of state-based advocacy strategies.

The Director will serve as PPMD’s lead for the Duchenne NBS Implementation Collaborative, providing strategic coordination and project management across its working groups, stakeholders, and state implementation efforts. Under the leadership of the Senior Director of Advocacy and in collaboration with other members of the Advocacy team, the Director will monitor state and federal legislation, regulations, policies, and public health initiatives to identify opportunities and challenges that may impact individuals and families living with Duchenne and Becker.

The Director will work closely with the Senior Director of Advocacy and PPMD leadership to identify, prioritize, and execute state government affairs opportunities consistent with PPMD’s mission and the priorities of the Duchenne and Becker community. This includes building and strengthening relationships with state policymakers, public health officials, advocacy partners, and other key stakeholders; supporting grassroots advocacy efforts; and developing strategies to advance policies that improve diagnosis, care, access, treatment, and quality of life for individuals and families living with Duchenne and Becker.

The Director will also collaborate extensively across PPMD’s programs and departments to support community engagement, educational initiatives, research and data efforts, and organizational priorities. The role requires strong project management, communication, relationship-building, and strategic thinking skills, as well as the ability to translate complex policy and public health issues into clear and actionable information for diverse audiences.

This individual regularly accesses highly confidential and sensitive information, including PHI, and interacts with a diverse group of individuals within PPMD and outside of the organization, including patients and families, clinicians, researchers, policymakers, public health officials, advocacy organizations, and industry representatives. It is imperative that the Director maintain discretion, confidentiality, and professionalism in the performance of the position’s duties, including adherence to HIPAA guidelines.

Essential Duties:

The Director, State Advocacy will be able to perform the following duties with or without reasonable accommodation:

Advocacy Focus:

Working with the Senior Director of Advocacy he/she will

• Serve as a member of PPMD’s Advocacy team, supporting the development and execution of strategies that advance PPMD’s state and federal policy priorities and improve outcomes for individuals and families living with Duchenne and Becker.
• Develop and implement state-based advocacy strategies, tailoring approaches to individual state policy environments, legislative calendars, public health systems, and implementation opportunities.
• Monitor state legislation, regulations, public health policies, and other government affairs developments relevant to Duchenne and Becker, identifying opportunities for PPMD engagement and recommending appropriate advocacy strategies.
• Build and maintain relationships with state legislators, legislative staff, state health departments, newborn screening programs and laboratories, policymakers, clinicians, advocates, and other key stakeholders to advance PPMD’s policy priorities.
• Represent PPMD at state legislative and public health meetings, newborn screening advisory and workgroup meetings, conferences, workshops, and other relevant forums. Provide testimony, public comment, presentations, and other communications as appropriate.
• Support and coordinate grassroots advocacy efforts by engaging individuals and families, developing advocacy materials and resources, identifying state and local champions, and preparing community members to participate effectively in state policy efforts.
• Work collaboratively with PPMD’s Care Team, Engagement and Communications Team, and other internal teams to ensure advocacy strategies and materials are informed by the experiences and priorities of the Duchenne and Becker community and are communicated effectively to diverse audiences.
• Build and strengthen bipartisan relationships and coalitions with organizations and stakeholders working on Duchenne, newborn screening, rare disease, disability, public health, access, reimbursement, and other related state policy issues.
• Partner with PPMD’s Community Engagement Coordinator and other members of the organization to monitor and advance state policies related to access, coverage, reimbursement, and other issues affecting the Duchenne and Becker community.
• Develop, track, and maintain state advocacy workplans, timelines, stakeholder lists, legislative activity, and other tools necessary to effectively manage and evaluate advocacy initiatives.
• Identify emerging policy issues and opportunities that may affect the Duchenne and Becker community and work with the Senior Director of Advocacy to determine appropriate PPMD engagement.
• Contribute to broader PPMD advocacy initiatives and organizational priorities as assigned.

Lead Newborn screening implementation efforts with primary responsibilities to

• Serve as PPMD Lead on the Duchenne NBS Implementation Collaborative, a multi-stakeholder alliance convened to accelerate the implementation of universal newborn screening (NBS) for Duchenne across all 50 states, the District of Columbia, and U.S. territories.
• Provide strategic leadership and project management for the NBS Implementation Collaborative, including coordination of working groups, development and implementation of state prioritization and action frameworks, stakeholder engagement, and tracking progress toward state implementation goals.
• Support efforts to educate state newborn screening programs, laboratories, policymakers, clinicians, and other stakeholders about Duchenne newborn screening through meetings, presentations, written materials, and other educational opportunities.

Community Research, Data & Cross-Functional Collaboration:

• Work collaboratively with PPMD’s Registry/Genetics, Care, Research, and other program teams to identify and leverage relevant data, research, and community insights to inform advocacy strategies and advance PPMD’s policy priorities.
• Collaborate with the Registry/Genetics Team on projects that utilize The Duchenne Registry, PPMD’s EHR Study, the Decode Duchenne genetic testing program, and other available data resources to support newborn screening advocacy and implementation efforts.
• Identify opportunities to use PPMD data and community insights to better understand gaps, barriers, and opportunities related to Duchenne newborn screening, diagnosis, care, access, and other policy priorities.
• Maintain close working relationships with the Care Team and Registry/Genetics Team and draw upon their expertise to inform advocacy strategies, particularly on clinical, genetic testing, newborn screening, and patient experience considerations.
• Translate relevant research, data, and technical information into clear, actionable insights that can inform advocacy strategies, stakeholder engagement, educational materials, and policy communications.
• Contribute to cross-functional projects and initiatives that advance PPMD’s broader organizational priorities and ensure that advocacy efforts are informed by the experiences, needs, and priorities of the Duchenne and Becker community.

Required Education, Experience, Skills and Attributes:

Education

• BA in public administration, public policy or related government studies; Master’s level degree preferred (MPA, MPP or equivalent degree)

Skills, Experience and Competencies

• Proactive, self-starter with ability to work independently with moderate supervision
• Minimum 2 years state-level advocacy and/or public policy experience – Someone who understands how to navigate state legislatures, health departments, and regulatory processes
• Grassroots campaign leadership – Experience mobilizing stakeholders, patients, families, and/or local champions to support state-level policy change.
• Coalition building– Demonstrated ability to bring together multiple stakeholders around a common implementation strategy.
• Knowledge of state public health systems – While direct NBS experience would be ideal, familiarity with how state public health programs operate is important for this position.
• Demonstrated project management, administrative, organizational, and detail-oriented skills
• Excellent written and verbal communication skills with the ability to tailor complex information in a simple, relevant way for a broad range of audiences (patients, clinicians, researchers, government officials, etc.)
• Strong interpersonal skills including a professional, collegial and collaborative demeanor to interact effectively with internal teams and external partners
• Proficiency in Microsoft Office suite (Word, Excel, PowerPoint) and Google docs
• Absolute adherence to standards of confidentiality, discretion, and ethical conduct
• Understanding and empathy for families in the Duchenne/Becker or rare disease community and a passion for the PPMD mission

Preferred Education, Experience. Skills and Attributes:

• Duchenne or other neuromuscular clinical experience
• Experience with Newborn Screening programs
• Multi-state project management – Experience developing tailored strategies across multiple states, recognizing that implementation pathways, timelines, and barriers vary considerably from state to state.

Physical Requirements: The Community Research Manager and Data Initiatives will be able to meet the following requirements with or without accommodation:

• Ability to travel locally and nationally via various modes of transportation with or without assistance
• Ability to navigate legislative buildings in order to meet with legislators and their aides
• Ability to keyboard for 2+ hours a day with breaks as necessary
• Ability to communicate orally in a clear and persuasive manner
• Physical stamina to lead and/or participate in meetings or conferences lasting 2+ hours

Travel: Moderate. Periodic travel approximately 15% / functions annually - is required to attend state legislative, community and educational meetings as needed.

Work Authorization/Security Clearance Requirements: Valid Authorization to Work in the United States.

Compensation: National Remote Salary Range: $100,000 – $120,000 per year. Please note: The high end of this range is reserved for candidates residing in premier cost-of-living metropolitan markets.

Affirmative Action/EEO Statement:

PPMD provides equal employment opportunities to all employees and applications for employment and prohibits discrimination and harassment of any type without regard to race, color, religion, age, sex, national origin, disability status, genetics, protected veteran status, sexual orientation, gender identity or expression or any other characteristic protected by federal, state or local laws.

This policy applies to all terms and conditions of employment, including recruiting, hiring, placement, promotion, termination, layoff, recall, transfer, leaves of absence, compensation and training.

Other duties:

Please note this job description is not designed to cover or contain a comprehensive listing of activities, duties or responsibilities that are required of the employee for this job. Duties, responsibilities and activities may change at any time with or without notice.