SATB2 Gene Foundation Executive Director - Remote, Full Time

The SATB2 Gene Foundation is dedicated to improving the lives of individuals and families affected by SATB2-Associated Syndrome (SAS). SAS is a neurodevelopmental disorder caused by problems in the SATB2 gene, located on chromosome 2q33.1, and primarily causes global developmental delays, absence of speech or significantly affected speech, dental issues, low bone density, and behavioral issues. The SATB2 Gene Foundation was established to support SAS individuals and families through raising awareness, family support, and research, and is a rapidly growing organization expanding its reach, resources, and impact each year.

Position Summary

The Executive Director (ED) will be a highly visible and inspiring leader who possesses the vision to grow and move the organization forward while building on the Foundation’s successes. This role provides strategic leadership, operational oversight, fundraising direction, and organizational representation. The ED partners closely with the Board Chair and Board of Directors to advance the Foundation’s mission, ensure strong governance, steward financial health, and deliver high‑impact programs for the SATB2 community.

The ED oversees staff, manages all day‑to‑day operations, leads fundraising and communications, works closely with the Board of Directors, and serves as the public face of the organization.

Key Responsibilities

Governance & Board Partnership

• Set Board meeting agendas in collaboration with the Board Chair
• Serve as an ex‑officio member of all Board committees
• Lead new Board member onboarding with the Board Chair
• Monitor Board tasks, follow‑ups, and governance timelines
• Stay current on nonprofit governance and compliance requirements
• Represent the Foundation publicly and maintain strong Board–staff communication

Organizational Leadership & Staff Management

• Manage all aspects related to the Foundation’s staff, including hiring, training, termination, performance reviews, and regular staff meetings
• Manage organizational inboxes and ensure timely communication
• Responsible for all contract negotiations, licenses, permits, insurance renewals, and other required paperwork.
• Lead and Implement the Foundation's Strategic Plan

Financial Management

• Develop and manage the Foundation’s annual budget in support of strategic priorities and operational capacity
• Review the monthly financial reports
• Approve all expenses and payments
• Work with the accountant to prepare and file annual tax filing
• Oversee annual QuickBooks setup

Fundraising

• Develop annual fundraising targets
• Develop and execute the fundraising strategy
• Lead major donor cultivation and stewardship
• Oversee corporate sponsorship strategy
• Oversee grant strategy, writing, compliance, and reporting
• Lead signature event and community-led fundraising efforts
• Direct annual SATB2 Awareness Day and Rare Disease Day strategy
• Create and write fundraising content for emails, newsletters, and social media
• Partner with the Development Committee Chair to support Board fundraising engagement

Research Oversight

• Approve research agreements, grants, and iPSC requests, and extensions.
• Coordinate negotiations with research partners
• Schedule and participate in Medical Advisory Board meetings
• Partner with the Research Committee Chair on priorities and recommendations to ensure implementation of all projects and opportunities

Awareness & Communications

• Develop and implement the monthly communications strategy for attracting and engaging donors, patient families, scientific allies, and other key stakeholders.
• Manage, write and/or review key messages and content to be published on the Foundation’s website, newsletter, social media, and other stakeholder communications.
• Maintain brand voice
• Lead the annual SATB2 Awareness Day and Rare Disease Day theme and strategy

Conference Leadership

• Lead venue search and contract negotiation for the biennial SATB2 Family and Medical Conference
• Develop and oversight of conference budget
• Oversee logistics, timelines, accessibility, and inclusion
• Approve all vendor contracts
• Serve as primary staff liaison to the Conference Committee
• Ensure alignment with mission and community needs

Family Support Oversight

• Assist with the implementation of Family Support Programming as per the strategic plan
• Oversee Family Support Financial Assistance Programs (Clinic Travel Grants, Conference Travel Grants, and AAC Grants)
• Partner with the Family Support Committee Chair to understand community needs

Project Management & Cross‑Team Coordination

• Maintain the organization‑wide project management tracker
• Conduct weekly progress reviews
• Oversee cross‑team coordination
• Ensure clarity, accountability, and timely execution

Qualifications

Required

• Minimum 5 years of leadership experience in a nonprofit or mission‑driven organization
• Demonstrated success in fundraising and donor cultivation
• Demonstrated competence in meeting and/or exceeding fundraising goals
• Strong nonprofit financial management skills
• Experience supervising staff and managing operations
• Excellent communication and public speaking skills
• Ability to work effectively with a volunteer Board
• Strong project management skills and highly organized
• Proven skills in writing clear and concise reports and correspondence
• Proficiency in common computer applications
• Bachelors degree required; for exceptional candidates a mix of experience and education would be considered

Preferred

• Experience in rare disease, scientific research, or healthcare nonprofits
• Passionate and curious to learn more about our community
• Familiarity with working with a working board of directors or family‑led foundations
• Experience with QuickBooks, Little Green Light, Mailchimp systems
• Background in event or conference planning

Reporting Structure

• Reports to: Board Chair
• Supervises: Admin / Project Manager and additional staff/contractors
• Serves as: Ex‑Officio member of all Board committees

• Flexible hours (some evening or weekend responsibilities)
• Paid holidays and paid time off
• Professional development stipend
• This position requires occasional travel to conferences, meetings, and organizational events. The organization will cover approved travel-related expenses
• Mission Driven Work

English