Executive Director

CCHS NETWORK

Position: Executive Director

Status: Full Time (40 hours/week); Exempt

Reports To: President, Board of Directors

SALARY: $100,000 with opportunity for growth based on successful fundraising campaign results. Benefits offered.

TO APPLY:

To apply, submit a resume and cover letter

electronically to jobs.cchsnetwork@gmail.com with “ED Application_Your Name” in

the email’s subject line. In your cover letter please include examples of

fundraising with revenue results, management, nonprofit, advocacy, and virtual

work experiences. Resumes without a cover letter will not be reviewed.

ABOUT CCHS NETWORK:

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. To learn more about the organization, please visit www.cchsnetwork.org

THE OPPORTUNITY:

Founded in 1989 by families seeking connection and support after a rare CCHS diagnosis, the CCHS Network has grown from a small grassroots effort into a global community. What began as a lifeline has become a driving force - supporting families, raising awareness, and funding over $2 million in innovative research. Led for more than 30 years by a dedicated volunteer Board, the Network has reached a pivotal moment in its growth. To build on this momentum and bring its strategic vision to life, the CCHS Network is now hiring its first Executive Director to expand its reach, strengthen its capacity, and deepen its impact in the worldwide CCHS community.

ABOUT THE POSITION:

The Executive Director provides overall leadership and management for the CCHS Network. Reporting to the Board of Directors, this role leads strategic initiatives, oversees financial stewardship, and guides the organization’s continued growth. The ideal candidate brings proven experience in nonprofit leadership, fundraising, and community engagement, along with a strong commitment to addressing the unique needs of the CCHS community. If unfamiliar with CCHS, the Executive Director must quickly develop a deep understanding of the condition to engage effectively with the community. Core responsibilities include implementing the 2025–2027 strategic plan, executing a robust fundraising strategy, managing the budget, and overseeing day-to-day operations. This is a remote position with one annual in-person Board meeting.

The Executive Director will help advance organizational goals, raise awareness of CCHS, expand programs, and clearly communicate the Network’s impact, as well as partner with the Board President to coordinate meetings, set agendas, and provide timely, accurate information to support effective governance.

EXECUTIVE DIRECTOR COMPETENCIES:

The Board seeks candidates with the following competencies:

• Collaborative Leadership. The ED will be a warm and engaging leader who is accessible and listens to all viewpoints, demonstrates confidence, and has a positive approach. The ED must be a highly accomplished relationship builder, comfortable in developing strategy and achieving buy-in from the Board and others and disciplined in executing plans and encouraging accountability. The ED, with Network leaders, will promote the compelling vision, mission, values, and strategic goals of CCHS Network to the varied CCHS communities. The ED must balance day-to-day needs with long-term vision. The ED will be decisive in action, self-directed, adaptable, humble, independent thinker, confident, and accountable.
• Ability in Fundraising and Resource Development. The ED must identify, engage, and steward donors and seek contributions of significance from various sources. Innovative and attuned to donor interests and concerns, the ED will inspire fundraising involvement from the Board and will guide them about “best practices” in donor development. He/she will also cultivate additional/alternative revenue streams to enhance and improve the organization’s funding potential. The ED will reach out and cultivate new potential donors/funding sources at all levels and work closely with the Board and others, for example, families, medical community, private foundation contacts, philanthropists, to generate funding opportunities. As well as overseeing the development of communications materials for diverse populations within the CCHS community ( e.g. families, donors, professionals, and partners), and working remotely with a volunteer Board of Directors who live across the country.
• Expertise in Communication. The ED is principally responsible for supporting and nurturing various communications by coordinating messages and internal and external outreach with the Board President and Executive Board. His/her Their communication and behavior should reflect the organization’s values and earn the Board’s trust and respect.
• Fiscal Management. The ED must plan for financial stability and sustainability in partnership with the Board Finance Committee and Treasurer. A key to this is having knowledge about organizational finances, the ability to establish and oversee a realistic budget, and the aptitude to use timely financial statements to guide and oversee organizational performance.
• Marketing and Presentation. The ED with the Marketing Committee will boost the Network’s visibility and credibility through strategic communications and new opportunities, focusing on raising its profile among funding sources and influencers.
• Sound Interpersonal Skills Management. The ED will support a culture of inclusion, opportunity, and accountability in the environment. He/she will foster innovation, teamwork, and collaboration to ensure that goals are established, resources appropriately allocated, and results achieved.

KEY RESPONSIBILITIES/ESSENTIAL FUNCTIONS

The key responsibilities of this position include, but are not limited to:

• Resource Development. As the ‘fundraiser in chief,’ the ED is charged to drive results in fundraising by:
  • Helping identify, cultivate and solicit prospective donors including high net worth individuals, private foundations, and institutional funding sources.
  • Leveraging personal and professional contacts and relationships of the Board and supporters into transformational fundraising opportunities.
  • Having a strong background with grant writing and reporting, creating individual, foundation, and sponsorship packets, and building membership programs.
  • Exploring alternative/earned revenue streams.
  • Forecasting revenue/contributions and expense budgets – able to build Proformas.
  • Promoting an optimistic culture of growth and engagement in the organization, at both at the Board and (future) staff level.
• Strategic Management. The ED serves as the principal resource to the Board and offers his/her advice about the strategic plan and decisions based on his/her experiences and proven track record.
  • Expected to have a visionary mindset needed to move the organization forward, finetune the organization’s strategies and work plans.
  • Coordinates work associated with the strategic plan, tactics, and opportunities.
  • Continually assesses results/impact and keeps the board informed when shifts in the guiding strategy cause a need for re-evaluation.
• Organization and Operational Management. The ED needs to have strong people and project management skills to help build a high performing board, engage with outside advisors/contractors, and hire future staff.
  • She/he will play a lead role in vetting, engaging, and mentoring new talent to serve on Board Committees, Task Forces, and/or Advisory Boards.
  • Develop and adapt the annual plan and budget as a roadmap for accountability.
  • Establish effective decision-making processes and Standard Operating Procedures (SOP) to encourage efficient use of resources (people, time, and money) and enable successful growth.
  • Ensure effective program evaluation systems and regularly assess the program portfolio to quickly adapt to meet diverse community needs.
  • Build a strong partnership with the Board, providing information and training to support effective governance and advocacy.

QUALIFICATIONS:

The ideal candidate will have:

• Passion for and commitment to CCHS Network’s unique mission and the ability to inspire others to partner in support of that mission.
• Knowledge of the rare disease communities.
• Established connections with donors.
• A proven track record in successfully leading and growing revenue and generating transformational support in non-profit organizations.
• A proven record of financial oversight, budgeting, and basic nonprofit financial management.
• A proven record of and genuine interest in successfully building trusted relationships with and among diverse constituencies and stakeholders.
• A successful track record of working with a team of volunteers and understanding the patient advocacy world.
• Comfortable with technology tools (CRM systems, donor databases, virtual collaboration tools, websites, social media, etc.).
• Soft skill business competencies include sense of urgency, adaptability, intrinsically self-directed, and self-motivated.
• Strong written and oral communications skills.
• Comfortable and adept working with 100% remote teams and sharing and editing materials thorough Google docs or other content/management platforms.
• A minimum of a bachelor's degree with 5+ years with management and governance experience in the public, private, or non-profit sector.

EQUAL EMPLOYMENT OPPORTUNITY (EEO):

The CCHS Network is an equal opportunity employer committed to building a diverse and inclusive team. We strongly encourage applications from women, people of color, LGBTQ+ individuals, people with disabilities, veterans, and individuals from other underrepresented backgrounds. Discrimination based on any protected characteristic is strictly prohibited.

Paid Time Off: Fifteen (15) days of paid time off per calendar year, with advance notice, accrued as described in the employment contract. PTO must be used within the calendar year and cannot be taken during major CCHS events (e.g., CCHS Day).

Sick Leave: Five (5) days per calendar year.

Paid Holidays: Up to eight (8) major holidays per calendar year, at your discretion.

Benefits, If Eligibility: Following a 90-day probationary period