Director of Development (Part-Time)

About Us

The SATB2 Gene Foundation, Inc. was established to enrich the lives of individuals with SATB2-Associated Syndrome (SAS), including those diagnosed with the condition and their families, through support, research and education. We serve a global community of families living with SAS, with families located across the United States and abroad.

As a small, growing organization with a working board, we’re building a foundation for sustainable growth and are seeking a creative, organized, and passionate Director of Development (Part-Time) to help lead our fundraising efforts.

Position Overview

We are seeking a creative, strategic, and relationship oriented Director of Development (Part-Time) to lead and expand our fundraising efforts. This role will be responsible for creating and executing a comprehensive fundraising strategy for the SATB2 Gene Foundation. This includes online and in-person fundraising efforts across individual giving, sponsorships, grants and events. A focus of the role will be supporting families in organizing local events and developing a signature, adaptable event model that can easily be replicated by families in their own communities.

The ideal candidate will bring experience from the non-profit sector - including a proven fundraising record, event planning, project management, community outreach, and donor engagement - and will be passionate about helping individuals make a real impact in the rare disease space.

As the organization grows, this role has the potential to evolve into an Executive Director position, offering leadership opportunities in overall operations, strategy, and team management.

Key Responsibilities

1. Establish annual fundraising targets and execute a comprehensive, diversified, and creative fundraising strategy - including both online (e.g., digital/social media campaigns) and offline components (e.g., grants, community-engagement activities, etc.) - to meet or exceed goals.
2. Support family-driven grassroots fundraising efforts, with a key focus on:
   • Creating a signature event that can be rolled out in individual communities.
   • Providing families with tools, templates, and ideas for other low-cost fundraising ideas that can be implemented at a local level
3. Manage online fundraising strategy to include, but not limited to, social media fundraising and peer to peer campaigns and leverage existing community based efforts from annual SATB2-Associated Syndrome Awareness Day, Rare Disease Day, and Year End Giving.
4. Research, identify, and apply for grant or sponsorship opportunities from foundations, corporations, and other funding sources.

Qualifications

• Experience: Minimum 3 years of relevant experience in fundraising, event planning, or nonprofit development is highly preferred. Experience working with family-driven or community-based fundraising, or within the rare disease space, is a plus.
• Skills:
  • Strong project management skills with the ability to execute multiple initiatives simultaneously.
  • Excellent written and verbal communication skills, including the ability to engage and motivate families, donors, and community stakeholders.
  • Familiarity with donor management systems and event planning tools (e.g., Little Green Light, Quickbooks, MailChimp) is a plus.
  • Knowledge of social media platforms and how to leverage them for grassroots fundraising efforts.
• Attributes:
  • Passionate about the rare disease/special needs space and making a meaningful difference in the lives of families affected by rare diseases.
  • Highly self-motivated, resourceful, and comfortable working independently and remotely.
  • Ability to collaborate with a working board and integrate feedback into actionable plans.
  • Creative thinker who enjoys problem-solving and developing new fundraising ideas.
  • A commitment to long-term growth and the potential to take on more responsibility as the organization scales.