Posted: Sep 9, 2021

Executive Director, MSA Coalition

MCI USA - McLean, VA
Application Deadline: N/A

Position Overview:

The executive director will have overall strategic and operational responsibility for the Multiple System Atrophy Coalition’s programs, expansion, and the execution of its mission.  S/he will develop an understanding of multiple system atrophy and the rare disease area as a whole, core programs, operations, and business plans of the organization, and will demonstrate a willingness to be flexible and versatile in a changing work environment while maintaining effectiveness and efficiency.  The executive director should be committed to the MSA Coalition’s comprehensive strategic plan including fundraising and building effective working coalitions with the rare disease community. 


Primary Duties and Responsibilities


  • Participate with the board of directors in developing a vision and executable strategic plan to guide the organization.
  • Initiate planning and outreach that facilitate developing and expanding the organization to fulfill its mission, achieve its strategic goals, and realize its vision.
  • Establish strong working relationships with the medical and research communities, raise awareness and build capacity. 
  • In addition to the chair of the board, act as a passionate spokesperson for the organization and its community.
  • Represent the organization at conferences and activities to enhance the organization's profile within the patient, medical and non-profit community.

Management and Administration

  • Oversee significant projects critical to the mission of the organization including the research funding proposal and selection process, annual family conference, and advocacy activities.
  • Develop an operational plan which incorporates goals and objectives that work toward the strategic direction of the organization.
  • Ensure that the operation of the organization meets the expectations of the patients and caregivers it serves, including support line staffing, web site content, and social media engagement, as well as its board and funders.
  • Draft policies for the approval of the board, prepare procedures to implement the organizational policies, and review existing policies on an annual basis and recommend changes to the board as appropriate.
  • Oversee the planning, implementation and evaluation of the organization's programs and services, working with the board committee chairpersons.
  • Monitor the day-to-day delivery of the programs and services of the organization to maintain or improve quality.
  • Identify and evaluate the risks to the organization's people (board members, staff, constituents, and volunteers) property, finances, goodwill, and image; and implement measures to control risks, including compliance issues and adequate insurance coverages.
  • Ensure the board of directors is proactively and fully informed through proper internal communications, including preparation for board meetings, and established periodic management reports.
  • Ensure the public is properly informed through appropriate communications such as press releases, newsletters, social media, and website updates.


  • Work with the board (Finance Committee) to prepare a comprehensive budget.
  • Approve expenditures within the limit set by the board. Follow proper channels for approval of larger expenditures.
  • Oversee the administration the funds of the organization according to the approved budget and monitor the monthly cash flow of the organization.
  • Ensure that the board is provided with comprehensive, regular reports on the revenues and expenditures of the organization.
  • Ensure compliance with guidelines of funding sources as well as all regulatory requirements.

Community Relations/Advocacy

  • Liaise with the medical and research community.
  • Communicate with stakeholders to keep them informed of the work of the organization and to identify changes in the community served by the organization.
  • Attend classes, workshops, and other training events to stay informed of current issues and trends in the larger rare disease community.
  • Establish good working relationships and collaborative arrangements with other non-profit groups, funders, politicians, and relevant organizations to help achieve the goals of the organization.
  • Coordinate representation of the MSA Coalition to legislative bodies and other groups.
  • Manage the organization’s social media presence and draft press releases as needed.


  • Oversee and supervise MCI USA MSA Coalition support services staff. Responsibilities include interviewing, recommending the hiring and training of employees; planning, assigning and directing subordinate MSA Coalition support staff work; appraising performance; rewarding and disciplining employees; addressing complaints and resolving problems
  • Oversee projects that involve staff from finance, fundraising and sales, communications and meeting planning areas.
  • Participate in a “360 review”, or similar process, to ensure MCI USA management and staff receive valuable feedback that will strengthen the relationship and service provided through the contract

MCI USA Responsibilities

  • Complete MCI USA/MCI timesheets and function as a MCI USA/MCI Team Member in accordance with MCI USA/MCI’s corporate vision and guiding principles
  • Serve as a member of MCI USA/MCI’s Client Leadership Team.



  • Highly organized with the ability to prioritize and manage multiple requests/projects.
  • Excellent written and verbal communication skills.
  • Collegial, collaborative style.
  • Good decision-making skills, tactful, good listener, willingness to search out answers, ability to recognize when others need to be involved in activities or decisions.
  • Creativity, empathetic, and an enthusiasm for meeting and working with a wide range of individuals.
  • Ability to establish and nurture relationships with volunteers, stakeholders, etc.



  • Bachelor’s degree required.
  • 3-5 years of progressive management experience in an association or non-profit organization, cause-based preferred. ED experience not required.
  • Ability to engage participation from all levels, and generate passion for the Coalition’s work, both internally and externally.
  • Disciplined self-starter who regularly exceeds goals.
  • Ability to work well in a team environment is essential.
  • Computer literacy required (Microsoft Office) and database familiarity. Knowledge of Classy desirable.
  • Ability to travel.


About MCI USA 

MCI USA helps companies and associations strategically engage and activate their target audiences, building community and boosting client performance through face-to-face, hybrid and digital experiences that support client business objectives. With US headquarters in the Washington, DC area and offices in New York, Miami, Baltimore, Dallas, and Chicago, MCI USA is rapidly expanding its platform to deliver a robust set of services in its Association and Corporate Solutions portfolios. Find out more at

About the Multiple System Atrophy Coalition

The Multiple System Atrophy ("MSA") Coalition is a 501(c)(3) charitable organization with a 30-year history of devotion to improving the quality of life and building hope for people affected by MSA through a four-pillar mission:

  • Providing patients and caregivers with trusted and compassionate emotional support
  • Educating patients, care-partners and healthcare professionals with credible, critically important and relevant information
  • Funding patient-centric collaborative research aimed at alleviating symptoms, slowing disease progression and discovering a cure
  • Building a sense of community by connecting and unifying people affected by MSA.

For more information, please visit


Interested candidates should send their cover letter with salary requirements and resume to [email protected] with the position title in the subject line.


Candidates must be authorized to work in the United States for any employer without sponsorship.

MCI USA is an Equal Opportunity Employer and is committed to Diversity, Equity and Inclusion. 

BIPOC applicants are strongly encouraged to apply.