Executive Director

Core responsibilities:

• Implement the 2025–2027 strategic plan and execute a robust fundraising strategy
• Manage the budget, oversee day-to-day operations, and ensure financial stability
• Lead strategic initiatives, guide organizational growth, and expand programs
• Build a strong partnership with the Board, providing information and training to support effective governance

This role creates positive change by expanding the organization's reach, strengthening its capacity, and deepening its impact in the worldwide CCHS community through raising awareness, building community, funding research, and advocating for improved understanding and care of this rare genetic disorder.

Required qualifications:

• Minimum of a bachelor's degree with 5+ years of management and governance experience in public, private, or non-profit sector
• Proven track record in nonprofit leadership, fundraising, and community engagement
• Experience with grant writing, financial oversight, budgeting, and nonprofit financial management
• Comfortable with technology tools (CRM systems, donor databases, virtual collaboration tools, websites, social media)

Salary: $100,000 with opportunity for growth based on successful fundraising campaign results. Benefits offered. This is a remote position with one annual in-person Board meeting.

The CCHS Network, Inc., a 501(c)(3) founded in 1989, supports individuals and families affected by Congenital Central Hypoventilation Syndrome (CCHS) - a rare genetic disorder that impairs automatic breathing during sleep and affects multiple body systems. The Network raises awareness, builds community, funds research, and advocates for improved understanding and care.