Executive Director

CureSHANK, a nonprofit accelerating treatments and precision medicine for Phelan-McDermid syndrome (PMS), is entering an exciting phase of growth. With a three-year goal of building a $3M annual science budget, we are expanding our leadership and organizational capacity to match our mission.

We’re seeking an Executive Director (ED) to guide this next chapter—an experienced, mission-driven leader who brings strategic vision, operational excellence, and strong fundraising and communications skills.

About the Role

The Executive Director will partner closely with the Board of Directors, staff, donors, and community stakeholders to drive strategic priorities, advance fundraising, strengthen infrastructure, and represent CureSHANK across the rare disease ecosystem.

Key Responsibilities

• Lead and execute CureSHANK’s strategic plan.
• Oversee fundraising efforts, including individual giving, grants, events, and major donor development.
• Build and steward relationships with funders, donors, partners, and sponsors.
• Lead communications across newsletters, email outreach, website, social media, and brand strategy.
• Ensure strong financial management, budgeting, and compliance.
• Oversee organizational systems and operational tools (e.g., Monday.com, Google Workspace).
• Serve as primary liaison to the Board and represent CureSHANK in public forums and with external partners.
• Strengthen organizational capacity through improved communications, financial practices, and impact tracking.
• Manage support staff.

Qualifications

• Leadership experience in a nonprofit or mission-driven environment.
• Proven success in fundraising and development.
• Strong communication, marketing, and relationship-building skills.
• Experience with financial oversight and organizational management.
• Strategic thinker with the ability to execute and lead teams.
• Passion for rare diseases and improving patient outcomes.

Why Join Us?

This is a unique opportunity to help transform the future of rare disease research and support families affected by Phelan-McDermid syndrome worldwide.

Apply by completing this Google Form https://docs.google.com/forms/d/e/1FAIpQLSeFB_JgQemmtYkl6zIucFBMsupq_HiYcCETKvMABJcKxlXd6w/viewform?usp=sharing&ouid=110904696529749750441