The CACNA1A Foundation is Hiring

Job Title: Executive Director
Location: Remote
Position Type: Full-time

The CACNA1A Foundation (CF) seeks a dynamic and experienced full-time Executive Director to lead the organization into an exciting new phase of growth and impact. Founded in 2020, we are a parent-led 501(c)(3) focused on accelerating research and therapeutic development for CACNA1A-related neurodevelopmental disorders, a rare genetic disease caused by changes in the CACNA1A gene. Over the next five years, we seek to grow our organizational competence and fundraising to increase long-term sustainability. Join us and become a part of our mission to accelerate research, inspire hope, and drive transformative change for individuals and families impacted by CACNA1A-related disorders. The Executive Director will oversee the strategy and operations of the Foundation’s programs, staff, and organization. Based in the U.S., this remote position requires strong leadership, strategic planning, operational management skills, and a passion for our mission.

Key Responsibilities:

The Executive Director provides strategic leadership to the organization and, in partnership with the Board of Directors, oversees its day-to-day operations. The Executive Director reports to the Board of Directors, and all staff report to the Executive Director. 

A. Strategic Leadership

  • Collaborate with the Board of Directors, Science Director, and Development Director to develop and implement strategic plans to advance the Foundation’s mission and goals

  • Maintain regular communication with the Board and participate in all Board meetings, including presenting a quarterly Executive Director’s report

B. Operational Oversight

  • Provide strategic leadership and hands-on management for all administrative and operational functions of the CF

  • Participate in the preparation of the annual budget and any additional budgets required, with the Board of Directors’ approval

  • Oversee the planning and execution of the CF’s biannual Family Conference, ensuring impactful programming, seamless logistics, and alignment with the organization's goals

  • Ensure compliance with all non-profit regulatory and reporting requirements, including tax filings, solicitation laws, and other applicable state and federal regulations

C. Fundraising and Development

  • Provide strategic oversight to the Director of Development and co-lead comprehensive fundraising efforts to secure financial support and grants from individual donors, corporations, philanthropic foundations, and other sources

  • Cultivate and maintain relationships with major donors, foundations, and corporate partners

  • Develop innovative fundraising strategies to ensure sustainable revenue streams

D. Program Oversight

  • Oversee the development and execution of programs and services that support families affected by CACNA1A-related disorders 

  • Ensure programs are effective, innovative, aligned with the Foundation's mission, and properly supported by staff

  • In partnership with the CF’s Science Director, Board President, Board Vice President, and Scientific Advisory Board, ensure that scientific programs and grants are effectively executed and aligned with the CF’s mission

  • Facilitate partnerships and research collaborations that drive research breakthroughs and clinical trials, and strengthen the expert clinical network

E. Community Engagement

  • Foster a strong sense of community among families, researchers, healthcare providers, and other stakeholders through direct interactions. 

  • Develop and oversee volunteer engagement. 

  • Represent the CACNA1A Foundation at conferences, meetings, and public events (approximately 8-10 events/year) 

  • Be active and present on social media platforms

Qualifications for this position include:

  • A minimum of five years of senior management experience in a rare disease, research-oriented, or patient advocacy nonprofit organization

  • Strong business acumen with an entrepreneurial mindset

  • Prove experience in fiscal management, fundraising, and board development

  • Demonstrated leadership skills, including the ability to set clear priorities and delegate and guide the work of remote staff and volunteers

  • Excellent communication and presentation skills; ability to serve as an engaging spokesperson, fundraiser, and relationship builder

  • Experience collaborating with a Board of Directors to ensure effective governance and strategic alignment

  • High integrity, a strong work ethic, and accountability

  • Passion for the mission of the CACNA1A Foundation and a commitment to improving the lives of individuals with CACNA1A and their families

  • Proficiency or willingness to learn platforms such as Network for Good, Google Workspace, Canva, Squarespace, and Zoom

  • Experience working remotely in a leadership role is preferred

  • Ability to travel 8-10 times per year

  • Bachelor’s degree required; advanced degree preferred

Compensation:

Competitive salary (TBD) and benefits allotment commensurate with experience

Application Instructions:

To apply, email your resume and cover letter to info@cacna1a.org. Files should be saved using the candidate’s first and last name. Only resumes and cover letters submitted in this format will be reviewed.

Join us in making a meaningful impact on individuals and families affected by rare neurodevelopmental disorders. We look forward to welcoming a dynamic leader to our team! The CF is an equal opportunity employer.