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Dir. of Advocacy and Volunteer Engagement

Job Details

Legal Address - King of Prussia, PA


Are you looking to make a difference in the world?

Looking to take the next step in your career with an impactful organization helping people?

Join AFTD, the leading organization dedicated to ending the most common dementia under 60, known as FTD. We help families affected today, and drive research to bring hope for the future. Our work to bring about a world without dementia is only missing your passion and your expertise. AFTD is growing rapidly, with a greater ability to offer help for those affected than ever before. Join us today to make a difference for families affected by FTD, across the United States and beyond.

Job Description

The Director of Advocacy and Volunteer Engagement is responsible for developing and executing a federal and state public policy agenda to advance priority issues in frontotemporal degeneration (FTD), the most common form of dementia in people under age 60. Together with AFTD leadership they will coordinate a strategic advocacy agenda and initiatives to advance it. They will represent AFTD externally in coalitions, with legislators, in professional meetings and conferences related to advancing AFTDs agenda. They do not need to be a registered lobbyist. The Director of Advocacy is responsible for the expansion of all volunteer engagement in support of AFTDs mission and will work in concert with the Senior Directors of Programs and Advancement to ensure integration of volunteer strategy and efforts across advocacy, community, and fundraising volunteers. They will serve on AFTDs Senior Management Team and interact with a broad array of AFTD stakeholders including Board members, key volunteers, staff, and community members.


Essential Job Functions

Develop Public Policy Agenda:

  • Collaborate with the executive leadership team to research, assess, and implement AFTDs overarching federal public policy agenda and initiatives, as well as that in strategically targeted states (NY, CA, select others).
  • Ensure AFTD understands the changing environment of public policy, legislation and regulation related to dementia research, treatment, health disparities and care delivery and identify trends and opportunities as they emerge.
  • Analyze policy, lead, and contribute to the writing of position papers and requests for comments.
  • Prioritize and operationalize issues, identify partners and move agenda to action.
  • Direct and manage the engagement of an external lobbying firm, if necessary, as part of overall strategy.

Relationship and Coalition Building:

  • Work with internal stakeholders to identify, develop, and implement strategic alliances regarding public policy with professional, medical, and patient advocacy groups.
  • Develop relationships with policy makers, including strategic legislative and congressional staff; administrative and regulatory officials and staff, and other with a focus on those with influence over dementia and healthcare funding, access and service development.
  • Develop collaborative relationships and partner with diverse organizations to build common cause around advocacy priorities. Serve as one of AFTDs advocacy voices in Washington, D.C, and within federal agencies, state legislatures, at advocacy coalition meetings, and with peer organizations.

Grassroots Advocacy and Volunteer Engagement:

  • In conjunction with the Advocacy Manager and Volunteer Services Manager, design and implement mechanisms to champion and harness the passion of volunteers committed to AFTDs mission.
  • Oversee development of AFTDs advocacy action center content and alerts in concert with Marketing and Communication staff and implement a robust cadence of advocacy campaigns. Establish an engaged and growing presence in national and targeted state public policy campaigns, initiatives, and programs.
  • Lead the strategic direction of AFTD volunteer services, increase strategic volunteer activity and foster the development of volunteer leaders for the organization. Expand the engagement of underrepresented communities in volunteer-related activities.

Department Management:

  • Manage AFTDs Advocacy and Volunteer Department budget, planning, staffing, performance reviews.
  • Develop and report on metrics to evaluate the success of programs under their responsibility.
  • Promote a team culture of high performance, continuous improvement, learning and professional development.

Other Job Functions

  • Consistently contribute as a member of AFTDs senior team
  • Conscientiously follow company policies and practices and take care of organizational property.
  • Travel for priority federal and state initiatives, organizational meetings and events as needed.


This person has supervisory responsibilities for the following roles:

  • Advocacy Manager
  • Volunteer Services Manager


Knowledge, skills, and abilities required for this role:


  • Bachelor's Degree in policy, public administration, public health, or related field required. Advance degree preferred.


  • Minimum 5-7 years experience in public policy or government relations, policy analysis required; experience in federal health, science or research-related setting preferred.
  • Minimum 5-7 years staff management and cross departmental leadership experience
  • Highly effective written, oral and interpersonal communication skills
  • Demonstrated experience in project management and directing public policy action campaigns
  • Ability to work collaboratively with elected officials, and internal and external partners to achieve results
  • Demonstrated interest in and ability to engage and activate a stakeholder community

Special Knowledge/Skills:

  • Deep critical thinking and problem-solving/analysis skills with ability to develop frameworks for evaluating and recommending cross-functional options and solutions.
  • Ability to balance multiple competing priorities and balance allocation of time between efforts.
  • Flexibility and openness to new ideas and new approaches.
  • Proficient in full Microsoft Office 365, particularly MS Teams, Word, Excel and PowerPoint
  • Ability to approach work with a pleasant and professional demeanor.


This position requires a periodic presence in Washington, DC either via primary base location or via driving or train travel from the Philadelphia area. AFTD maintains a hybrid work environment offering up to three days remote work possible and two in the King of Prussia, PA Office. Arrangements for this specific position are negotiable.


Interview Process

  • Submit an application, including cover letter and resume
  • Phone screen with a member of AFTDs HR department
  • Interview with Hiring Manager
  • Team interview with department staff
  • Offer made to final candidate (contingent on reference and background checks)
  • Additional interviews or assessments may be required depending on the position

Awards & Accolades

  • Platinum Transparency 2022 by GuideStar, an organization that collects and publishes IRS-verified data about charitable organizations, issuing Seals of Transparency based on how much information each charity provides
  • 4-star rating on Charity Navigator, an organization that assesses nonprofits organizational effectiveness through IRS filings and metrics such as, Impact & Results, Accountability & Finance, Culture & Community, and Leadership & Adaptability

Benefits and Perks

AFTD offers a competitive salary and is committed to providing a comprehensive benefits package to meet the needs of our employees and their families, including:

  • Medical, Dental and Vision insurance for eligible employees regularly working 30 hours or more per week presently AFTD covers 100% of employee individual medical coverage
  • Basic Life Insurance/AD&D
  • Company-paid short-term and long-term disability insurance
  • Identity Protection
  • Voluntary Term Life/AD&D
  • Pet Insurance
  • Employee Assistance Program
  • SIMPLE IRA with company match
  • Generous paid vacation and sick time
  • 10 paid holidays
  • A company culture that encourages work/life balance
  • Ongoing team building opportunities, including staff retreats and days of service.
  • Ongoing professional development training and opportunities
  • Hybrid working environment, with the opportunity to work remotely up to 3 days per week.
  • Business casual dress code

The Association for Frontotemporal Degeneration requires all new employees to present proof they are fully vaccinated against COVID-19 when they start work. Currently, fully vaccinated is defined as someone that has received both doses of the Pfizer/Moderna COVID-19 vaccines or one dose of the Johnson & Johnson COVID-19 vaccine 14 days or more before they begin work. Individuals with a disability or a religious reason preventing them from taking the vaccine may request an accommodation.

AFTD is committed to creating a diverse environment and is proud to be an equal opportunity employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age, or veteran status. All of your information will be kept confidential according to EEO (Equal Employment Opportunity) guidelines.