Executive Director (part-time)

Job Type

Part Time Contract




Details: Salary will be determined based upon experience.



Start Date:


Application Deadline:



Pilot Grove
United States


The Moebius Syndrome Foundation invites applications for the position of Executive Director.  The Foundation is seeking an Executive Director who will work out of his/her home.  It will be part time at 25 hours per week.  The Executive Director is responsible for overseeing the administration, programming, financials and operational aspects of the Foundation. Other key duties include fundraising, marketing and community outreach. The position reports directly to the Board of Directors.


The Moebius Syndrome Foundation is a 501c3 national organization founded by parents of children with Moebius syndrome in 1994.  The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.

Job Summary

A strategic, experienced leader will work under the direction of the Board of Directors to accomplish the goals and objectives of the Foundation. The Executive Director is the executive level operations and administrative position responsible for the overall administrative functions of the Foundation, promoting the interests of the members of the Foundation and implementing efforts to realize the vision and mission of the Foundation.  


Board Governance: Works with Board in order to fulfill the organization mission. Responsible for communicating effectively with the Board and providing, in a timely and accurate manner, all information necessary for the Board to function properly and to make informed decisions.

Organization Mission and Strategy: Works with board and staff to ensure that the organizational mission is fulfilled through programs, strategic planning and community outreach.

Organization Operations: The Executive Director for the Moebius Syndrome Foundation will be responsible for administration of the Foundation and will oversee and implement appropriate resources to ensure that the operations of the organization are appropriate. The Executive Director manages a virtual staff.

  • Records and data management;
  • Marketing and grant development;
  • Oversee the Foundation newsletter
  • Timely correspondence within and beyond the Moebius community, including updating the website and mailing out welcome packets to new members;
  • Attendance at and participation in conferences;  
  • Responsible for member and donor relations including maintenance of a membership and donor database;
  • Responsible for the hiring, management and retention of competent, qualified staff;
  • Responsible for establishing agreements and contracts on behalf of the organization.


Financial Performance: Manage the day-to-dayoverall financial operations and supervise bookkeeper


  • Responsible for development and submission to the Board of a proposed annual budget and evaluation of Foundation adherence to the budget.
  • Responsible for supervision of bookkeeper in order to maintain the organization in a positive financial position.
  • Responsible for fundraising and developing other resources necessary to support the Foundation’s mission.

Knowledge and Skills

The Executive Director will share our commitment to provide information and support to adults and children with Moebius syndrome, increase awareness of Moebius syndrome, and support research into Moebius syndrome.  A passion for rare disorders, craniofacial conditions, particularly Moebius syndrome, is essential.

Desired skills include:

  • Strong written and verbal communication skills
  • Ability to work effectively in collaboration with others
  • Strong marketing and fundraising experience
  • Knowledge or experience of systems and new technology including member databases, financial management, social media
  • Excellent organizational skills


This position requires at least three years of experience at the level of an executive director for a nonprofit organization, or equivalent experience.  

How to apply

Please respond with a cover letter and resume.  Email to EDsearch@moebiussyndrome.org with Executive Director in the subject line.  Applications are due by May 11, 2018.


Professional Level

None specified

Minimum Education Required

4-year degree

How To Apply