Chief Executive Officer

About This Opportunity

The Association for Frontotemporal Degeneration (AFTD) seeks an exceptional leader to serve as its next Chief Executive Officer. Founded over 20 years ago by a former caregiver, AFTD has grown into the leading organization providing help and hope to those affected by frontotemporal degeneration - the most common form of dementia for people under 60. With a clear and urgent mission to improve the quality of life for those impacted and drive research toward treatments and a cure, AFTD touches every dimension of the FTD landscape: awareness, research, support, education, and advocacy.

After 18 years of remarkable growth under founding leadership, the organization stands at a pivotal inflection point. Financially robust with an annual budget exceeding $10 million, 58 skilled and dedicated employees, a strong and engaged Board of Directors, and a national network of over 600 volunteers, AFTD has built exceptional infrastructure and credibility. As the lead convener in the FTD space, the organization holds a unique position - connecting those diagnosed, care partners, researchers, clinicians, pharmaceutical companies, and policymakers in pursuit of breakthrough treatments. The next CEO will build on this solid foundation while evolving the organization's culture, deepening strategic partnerships across the FTD ecosystem, and scaling systems to match its expanding impact. For a collaborative, mission-driven leader who can navigate scientific complexity, build relationships across diverse stakeholders, and foster an organizational culture where innovation and talent flourish, this represents an extraordinary opportunity to accelerate progress for a community that cannot wait.

The successful candidate will be both a strategic visionary and an authentic relationship builder - someone who can hold the full complexity of this community with the urgency of those impacted, the rigor of scientific advancement, and the hope that sustains this vital work.

Core Competencies

Mission Leadership & Community Engagement

The CEO serves as the heart of mission focus for the organization, modeling authentic and passionate commitment—a servant leader who leads with empathy for people living with FTD and balancing the needs of the whole community in organizational choices. This requires:

• Deep community connection - Building trust and meaningful relationships with those diagnosed, care partners, and families; understanding their lived experience and ensuring their voices shape organizational priorities
• Mission translation - Communicating AFTD’s purpose with empathy and credibility, helping diverse audiences understand not only what AFTD does but why it matters. Connect the lived experiences of those affected by FTD with the scientific and strategic work that drives progress—turning awareness into advocacy and belief into action.
• Credible scientific literacy - Engaging confidently with researchers, clinicians, pharmaceutical partners, and the FDA; asking informed questions and representing the organization with credibility in scientific spaces (note: while scientific background is valuable, healthcare or rare disease experience combined with strong learning agility is sufficient given the depth of scientific expertise on the leadership team)
• Convening power - Leveraging the organization's unique position as the lead convener in the FTD space, to build coalitions, facilitate collaboration, and unite stakeholders toward common goals

Organizational & Strategic Leadership

The CEO provides strategic direction while building the infrastructure and culture needed for sustainable impact:

• Strategic vision - Setting clear, ambitious organizational priorities that balance urgency with long-term sustainability, making sound decisions about resource allocation and programmatic focus
• Scaling expertise - Successfully leading organizations through growth and maturation; implementing systems, processes, and governance structures appropriate for the organization's current size and future trajectory
• Distributed leadership - Empowering senior leaders and building a leadership capacity throughout the organization through a growth mindset, high-trust team model
• Culture architect - Creating an organizational environment where teams thrive, innovation is encouraged, and diverse perspectives strengthen decision-making and problem-solving
• Financial stewardship - Providing sound oversight of multimillion-dollar budgets, ensuring fiscal health, and making strategic investments in mission impact
• Performance management - Establishing meaningful metrics to measure organizational impact, drive continuous improvement, and demonstrate accountability to stakeholders
• Change management - Navigating organizational evolution with transparency and care, honoring the organization's legacy while positioning it for its next chapter
• Crisis leadership - Making sound decisions under pressure, managing organizational risk, and maintaining stakeholder confidence during challenging circumstances

Communications & External Relations

The CEO serves as the organization's primary spokesperson and ambassador:

• Compelling storyteller - Communicating the mission with clarity, authenticity, and emotional resonance across platforms and audiences
• Thought leadership - Representing AFTD as a subject matter expert in rare disease advocacy, dementia care, and FTD research, speaking credibly at conferences, in media, and with policymakers
• Strategic relationship builder - Cultivating partnerships with research institutions, pharmaceutical companies, government agencies, peer organizations, and other stakeholders in the rare disease ecosystem
• Public presence - Serving as the face of the organization with credibility and gravitas in media appearances, policy forums, and community events
• Board partnership - Working collaboratively with the Board of Directors as strategic partners; providing transparent updates, seeking counsel, and building a relationship of mutual accountability and trust

Development & Resource Generation

The CEO ensures the organization has resources to fulfill its mission:

• Sophisticated fundraising leadership - Driving a comprehensive development strategy that includes individual donors, corporate partnerships, foundation grants, and planned giving.
• Donor relationship management - Personally cultivating and maintaining major donor relationships and inspiring philanthropic investment
• Diversified revenue strategy - Building sustainable funding streams appropriate for a national rare disease organization

The Ideal Candidate

While no single candidate will possess every attribute, the ideal leader brings:

Experience & Track Record:

• 10+ years of progressive leadership experience, with significant time in executive roles
• Proven success managing budgets of $10M+
• Demonstrated fundraising leadership, including personally securing 6-7 figure gifts
• Experience in healthcare, rare disease, patient advocacy, or life sciences sectors strongly preferred
• Track record of leading organizations through growth, including building infrastructure and evolving culture, and scaling the mission

Leadership Qualities:

• Authentic and passionate mission alignment and ability to connect meaningfully with those impacted by rare disease
• A servant leader who leads with empathy and purpose, ensuring that every decision serves AFTD’s mission and those diagnosed and impacted by FTD
• Collaborative, empowering leadership style, with a growth mindset that builds trust and develops talent
• Self-awareness and commitment to continuous learning
• Emotional intelligence and ability to navigate complex stakeholder relationships
• Strategic mindset balanced with operational excellence
• Values technology and innovation
• Resilience and optimism in the face of a challenging disease landscape

Skills & Capabilities:

• Exceptional communication abilities across written, verbal, presentation, and interpersonal contexts
• Relationship-building strengths and coalition-building experience
• Scientific literacy or demonstrated ability to quickly build credibility in scientific communities
• Comfort operating at the intersection of patient advocacy, research, industry, and policy

Position Details

Reports to:                  AFTD Board of Directors

Leadership Team        Four executive team leaders across Operations, Scientific Research, Programs, and Advancement                                                      (direct reports):         Executive Assistant and Board Liaison

Location:                   King of Prussia, Pennsylvania - hybrid schedule. Relocation assistance available.

Travel:                       Regular travel required domestically and internationally for community engagement, conferences, and donor cultivation

Compensation:          Competitive compensation commensurate with experience

Timeline:                    AFTD seeks to have the new CEO in place by April 2026 to ensure a smooth leadership transition.

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
• Life Insurance/AD&D
• Company-paid short-term and long-term disability insurance
• SIMPLE IRA with 3% company match
• Generous paid vacation and sick time
• 10 paid holidays + December 25th through New Years Day 
• 4 weeks paid parental leave
• Identity Protection
• Voluntary Term Life/AD&D
• Hospital Indemnity, Accident, and Critical Illness insurance
• Pet discount program
• Employee Assistance Program
• 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
• Business casual dress code

We look forward to hearing from leaders who are ready to join us in the urgent work of ending FTD.

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 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.

AFTD participates in E-Verify. Learn more about applicant rights under Federal Employment Laws.