Job Details

Executive Director –

Location:   Cincinnati, OH

Salary:   based on experience

Last Updated:   June 23, 2017



  • Lead a national organization focused on the treatment and cure of a rare genetic disorder
  • Collaborate with a passionate Board and organization that has raised and invested over $40 million toward research since 1990.
  • Leverage the expertise of a Chief Science Officer and 14 Research Centers of Excellence throughout the country.
  • Lead and develop a staff focused on helping families and increasing awareness and financial support. 


Rett syndrome is a rare non-inherited genetic postnatal neurological disorder affecting mostly females, usually starting when they are 6-18 months old. It has a wide range of symptoms, with many autistic characteristics, often including the loss of speech, the ability to walk and the purposeful use of hands. 

The mission of the International Rett Syndrome Foundation, doing business as, is to accelerate full spectrum research to cure Rett syndrome and empower families with information, education and connectivity.

  • Based in Cincinnati, Ohio, is a 501(c)(3) non-profit corporation established in July 2007 through the strategic merger of the Rett Syndrome Research Foundation and the International Rett Syndrome Association.
  • is the largest private source of funds for biomedical and clinical research on Rett syndrome. The Foundation directs over 85% of each dollar donated directly to program services and research.

For more information visit



The Board is looking for a mission-focused, strategic, and results-driven leader with extensive experience in fundraising. The ED will serve as the leader of the organization and will oversee execution of the overall strategic goals. The successful candidate will work together with the organization's Board of Directors, supported by a Chief Science Officer and a talented staff. The ED will work with the Board to set policy and direction but will also be responsible for direct fundraising. 

Desired Profile:

  • Leader respected by staff, board, volunteers and donors.
  • Fundraiser with experience working in a foundation or a fundraising organization.
  • Communicator at all levels. The “face” of the Foundation.
  • Strategic thinker and doer who asks tough questions and makes tough decisions.
  • Risk taker with an entrepreneurial spirit. 


Strategic planning and goal setting

  • Direct the strategic planning process in conjunction with the Board
  • Establish goals and evaluation criteria for each program area
  • Report to the Board of Directors on all key goals and outcomes 

Board Development

  • Work with the Board Chair to identify prospective new board members for consideration by the Nominating Committee.
  • Develop Board committee structure and provide support to ensure the committee meetings are productive.
  • Develop strategies to keep the Board well informed and engaged. 


  • Responsible for the recruitment, management, and professional development of all staff.
  • Ensure that job descriptions are developed, that regular performance evaluations are held, and that sound human resource practices are in place.
  • Instill a human capital development culture within the organization by focusing on training, development, compensation and benefits, employee relations, performance evaluation and recruiting.
  • Lead the performance management process that measures and evaluates progress against goals.
  • Provide for all staff a strong day-to-day leadership presence in the Cincinnati Office; bridge national and remote office operations and support healthy communications among all staff
  • Lead and manage the organization’s staff who have the following responsibilities:
    • Fundraising
    • Family Empowerment
    • Research
    • Marketing and Communications
    • Web Site
    • Database
    • Administration/Finance
  • Support the recruitment, training, and development of volunteers. 


  • Develop the annual fundraising plan in collaboration with the Board.
  • Build the fundraising staff as required to support fundraising plan.
  • Ensure the organization is meeting its metrics and overall revenue goals.
  • Travel to events and fundraising programs.
  • Generate new fundraising opportunities that support annual growth and sustain core programs, including grants and corporate support.
  • Identify opportunities to collaborate and partner with related regional organizations. 

Communications & Marketing

  • Raise public awareness about Rett syndrome and the goals of
  • Represent the programs and point of view to other organizations, agencies, foundations and the public.  
  • Maintain a working knowledge of significant developments and trends in the field.  
  • Connect with key stakeholders of the organization, including but not limited to, families and women impacted by Rett syndrome. 

Program Management (Family Empowerment and Research)

  • Increase key impact measurements.
  • Ensure that all programmatic goals are achieved. 
  • Ensure programs meet budget guidelines. 

Finance, Technology & Quality Improvement

  • Develop and manage the operational budget.
  • Ensure the Finance Committee of the Board is active and engaged.
  • Work with the outside accountant to provide monthly financial reports, monthly cash reports and monitor investments.
  • Ensure a culture that uses data to make decisions.
  • Oversee the organization’s Quality Improvement Plan. 


  • Personal and professional passion for working with families with a child with special needs and for the vision and mission of
  • Solid educational background—undergraduate degree required; MBA or similar advanced degree desired.
  • Fundraising success: ability to build and sustain meaningful relationships with public and private funders and donors.
  • Active involvement with a mission-driven organization as a Board member or management team member
  • Engaged management style that focuses on development, mentorship, and ongoing communication
  • Results driven with a track record of exceeding goals.
  • High level of business acumen including successful P&L management, thorough understanding of business functions and systems, including budgeting, business analysis, finance, information systems, human resources and marketing.
  • Experience being the face of an organization with employees, Board members, funders and other key stakeholders
  • Strategic vision and experience leading a strategic planning process
  • Capacity Building—ability to effectively build organization and staff capacity by developing a top-notch team and recruiting top talent.
  • Action Oriented—enjoys working hard and looks for challenges. Willing to take charge of a situation; can overcome resistance to change and take unpopular stands when necessary.
  • General Management—thorough understanding of the full range of business functions and systems, including strategic development and planning, budgeting, business analysis, finance, information systems, human resources and marketing.
  • Ability to travel nationally once or twice a month.
  • Current with the latest trends and challenges in non-profit leadership and funding
  • The Executive Director will be based in Cincinnati, Ohio at the headquarters office. 


  • See your efforts have a direct impact on the lives of families every day
  • Work collaboratively with a passionate group of staff members, Board members, world-class researchers and volunteers
  • Continue to build on the momentum leading to treatments and a cure for Rett syndrome 


Rick Maier, Partner