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 ecosystem 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.

This 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. It is imperative that the Director maintain discretion, confidentiality, and professionalism, including adherence to HIPAA guidelines.

# Essential Duties

## Advocacy Focus

Working with the Senior Director of Advocacy, he/she will:

– **PPMD Advocacy Team** — Serve as a member of PPMD’s Advocacy team, supporting strategies that advance state and federal policy priorities.
– **State-Based Strategies** — Develop and implement state‑based advocacy strategies tailored to individual state environments.
– **Policy Monitoring** — Monitor state legislation, regulations, and public health policies relevant to Duchenne and Becker.
– **Stakeholder Relationships** — Build and maintain relationships with legislators, health departments, NBS programs, clinicians, advocates, and other stakeholders.
– **Representation** — Represent PPMD at legislative meetings, advisory groups, conferences, and public health forums.
– **Grassroots Support** — Support grassroots advocacy by engaging families, developing materials, and preparing community members.
– **Cross-Team Collaboration** — Work collaboratively with Care, Engagement, Communications, and other internal teams.
– **Coalition Building** — Build bipartisan relationships and coalitions across rare disease, disability, public health, and access policy areas.
– **Access & Coverage** — Partner with Community Engagement to advance policies related to access, coverage, and reimbursement.
– **Workplans & Tracking** — Develop and maintain workplans, timelines, stakeholder lists, and legislative tracking tools.
– **Emerging Issues** — Identify emerging policy issues and recommend appropriate engagement.
– **Organizational Priorities** — Contribute to broader advocacy initiatives and organizational priorities.

## Newborn Screening Implementation

Primary responsibilities include:

– **NBS Collaborative Leadership** — Serve as PPMD Lead on the Duchenne NBS Implementation Collaborative.
– **Strategic Leadership** — Provide strategic leadership and project management for the collaborative.
– **Stakeholder Education** — Support efforts to educate NBS programs, labs, policymakers, clinicians, and other stakeholders.

## Community Research, Data & Cross‑Functional Collaboration

– **Data Collaboration** — Work with Registry/Genetics, Care, Research, and other teams to leverage data and insights.
– **Registry Projects** — Collaborate on projects using The Duchenne Registry, EHR Study, Decode Duchenne, and other data.
– **Gap Analysis** — Identify gaps and opportunities related to NBS, diagnosis, care, and access.
– **Cross-Functional Work** — Contribute to cross‑functional initiatives informed by community needs.
– **Translation of Data** — Translate research and technical information into actionable insights.

# Required Education, Experience, Skills & Attributes

## Education

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

## Skills, Experience & Competencies

– **Self-Starter** — Proactive, able to work independently.
– **State Advocacy Experience** — Minimum 2 years state-level advocacy/public policy experience.
– **Grassroots Leadership** — Experience mobilizing stakeholders and families.
– **Coalition Building** — Ability to bring stakeholders together.
– **Public Health Knowledge** — Familiarity with state public health systems.
– **Project Management** — Strong organizational and detail-oriented skills.
– **Communication Skills** — Ability to tailor complex information for diverse audiences.
– **Interpersonal Skills** — Professional, collaborative demeanor.
– **Technical Skills** — Proficiency in Microsoft Office and Google Docs.
– **Confidentiality** — Adherence to confidentiality and ethical conduct.
– **Community Empathy** — Understanding and empathy for Duchenne/Becker families.

## Preferred Qualifications

– Duchenne or neuromuscular clinical experience.
– Experience with newborn screening programs.
– Multi‑state project management experience.

# Physical Requirements

– Ability to travel locally and nationally.
– Ability to navigate legislative buildings.
– Ability to keyboard for 2+ hours/day.
– Ability to communicate orally in a clear manner.
– Physical stamina for meetings lasting 2+ hours.

# Travel

Moderate travel required (approx. 15% annually).

# Work Authorization

Valid authorization to work in the United States.

# Compensation

National Remote Salary Range: **$100,000 – $120,000 per year**.
High end reserved for premier cost‑of‑living metropolitan markets.

# Affirmative Action / EEO Statement

PPMD provides equal employment opportunities to all employees and applicants and prohibits discrimination and harassment of any type. This policy applies to all terms and conditions of employment.

# Other Duties

This job description is not designed to cover all duties or responsibilities. Duties may change at any time.

Email [email protected] for more information on how to apply.