Executive Director Position

Job Title: Executive Director

Position Type: Part-Time  

Location: Remote

 

About International FOXP1 Foundation:

 

The International FOXP1 Foundation is dedicated to building a global community that empowers and supports families and individuals with FOXP1 syndrome by sharing knowledge, inspiring hope, encouraging research, and raising awareness. The Foundation was established in 2020 and has been managed by a team of parent volunteers. The Executive Director will now join the leadership team in a part-time capacity, overseeing operations and all programs with the support of the Board of Directors and key community volunteers.

 

Position Overview:

 

The Executive Director (ED) will be responsible for the overall strategic, operational, and financial management of the International FOXP1 Foundation. The ED will work closely with the Board of Directors to execute the Foundation’s mission, vision, and values. As a leader in the organization, the ED will oversee fundraising, financial management, program development, and communications. The Executive Director is expected to act as a passionate advocate for individuals affected by FOXP1 syndrome and drive the Foundation’s efforts to advance community-building, research, and public awareness.

 

Key Responsibilities:

 

Operational Management: The ED will provide strategic leadership for the Foundation, working closely with the Board of Directors to ensure that its goals align with the Foundation's mission. This includes helping define key initiatives and supporting their implementation. The Foundation’s network of dedicated volunteers will assist in the implementation and execution of various initiatives and provide support to ensure that the Foundation’s goals are met efficiently and effectively.

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The ED will help manage the Foundation’s financial health by overseeing resource allocation, maintaining a balanced budget, and ensuring compliance with necessary regulatory and reporting requirements, with support from accounting and tax professionals.

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The ED will oversee day-to-day operations by establishing and streamlining processes for document management, record-keeping, scheduling, and other administrative tasks that support efficient information flow and decision-making. The ED will also standardize procedures for meetings, ensuring regular scheduling for the Board and volunteer committees to promote clear communication and accountability. Occasionally, the ED may need to travel for events, meetings, or fundraising initiatives. 

Development: The ED will develop and oversee fundraising strategies to support the Foundation’s mission, including securing grants, cultivating donor relationships, and organizing events. They will collaborate with the board and committees to build a sustainable funding pipeline. The ED will also lead advocacy efforts, educational opportunities, and event planning, delegating tasks to ensure successful outcomes. Additionally, the ED will manage fundraising campaigns, identify new funding opportunities, and maintain strong connections with donors and foundations to ensure the Foundation’s financial sustainability.

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Research: The ED will collaborate with the Foundation’s Research Committee to develop initiatives and programs to ensure they address the needs of individuals and families impacted by FOXP1 syndrome. While the research committee will carry out the day-to-day work, the ED will ensure the programs are aligned with the Foundation's mission, monitor progress against performance metrics, and foster relationships with research institutions, healthcare professionals, and advocacy groups.

Community: The ED will support and guide the Community Engagement Committee in fostering relationships with families, patients, and caregivers to strengthen the Foundation’s network. This includes developing strategies to increase community participation, enhancing communication channels, and creating opportunities for families to share their experiences and support one another. The ED will work with the committee to engage both new and existing community members, ensuring their involvement through events, digital platforms, and regular outreach. By promoting collaboration and open dialogue, the ED will help create a more connected, informed, and active community that drives the Foundation’s mission forward.

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Communications: The ED will oversee the Communications Committee, ensuring that the Foundation's messaging is consistent and impactful. While the committee will handle content creation and distribution (including social media, newsletters, and public-facing materials), the ED will set the strategic direction and serve as the primary spokesperson to represent the Foundation’s mission, values, and goals to external stakeholders.

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Qualifications:

 

• Proven experience as a director, executive director, or in another senior leadership role in a non-profit organization, preferably in the healthcare, rare disease, or research sectors.

• Successful track record of non-profit financial management, fundraising strategies, and grant writing.

• Experience in managing and growing donor relationships and successful fundraising initiatives.

• Demonstrated ability to lead teams, fostering a positive and inclusive work environment.

• Excellent communication, public speaking, and interpersonal skills, with the ability to engage diverse audiences.

• Commitment to the mission of the International FOXP1 Foundation and the ability to effectively advocate for individuals and families impacted by FOXP1 syndrome.

• Some understanding of clinical research, drug development, and scientific advancements would be a plus.

• Undergraduate degree required, MBA or similar advanced degree desired.

• Proficient in Microsoft Office (Word, Excel, and PowerPoint), Google Workspace, and popular social media platforms.

 

How to Apply:

Interested candidates should submit a resume to apply@foxp1.org by April 1, 2025. Please include "Executive Director" in the subject line.