Executive Director, The Myositis Association

5 days left

Virginia, United States
Salary Commensurate with experience
Aug 31, 2020
Sep 29, 2020
Position Type
Employment Type
Full Time

The Myositis Association (TMA) is currently headquartered in Alexandria, VA.

Remote work can be an option for the right candidate.




The Myositis Association is the leading organization committed to the global community of people living with this group of rare muscle disorders. TMA’s mission is to improve the lives of persons affected by myositis, fund innovative research and increase myositis awareness and advocacy.

TMA is known for several signature activities. An annual patient conference brings together patients, caregivers and TMA’s medical advisory board. Dozens of local support groups meet to help members overcome isolation, form ongoing relationships and connect to local resources. TMA helps match patients with clinical trial opportunities and has funded millions of dollars of research in close collaboration with the medical advisory board.

TMA traces its origins back to 1993 with an initial membership of 16 that has grown to over 11,000 today. Current staff is 4 FTEs and the annual budget is approximately $1.6 million. Key challenges facing the organization include charting a strategic vision that engages all key stakeholders and securing sufficient resources to fund mission-critical programs. For more information about TMA, please visit the website at Myositis.org.

Position Summary

The Myositis Association is seeking an Executive Director to engage its multi-faceted constituencies for the benefit of those living with myositis and their caregivers. The ideal candidate will demonstrate excellence in leadership, strong management skills and a proven ability to generate resources to achieve the organization’s mission.


  • Provide thought leadership and engage the board, staff, members, medical advisory board and funders in developing a consensus about the organization’s strategic future.
  • Secure the resources needed to meet TMA’s program and research goals through fundraising and other revenue-generating activities.
  • In partnership with the TMA member support groups, engage and grow TMA membership through virtual and in-person (when conditions permit) group meetings, social media and other forms of outreach.
  • Skillfully recruit and manage staff, providing opportunities for individual growth and advancement.
  • Implement innovative programs to achieve the mission of the organization.
  • Develop collaborative initiatives with organizations sharing similar goals in myositis and the larger rare disease space.
  • Advocate for the interests of the myositis community in legislative policies, public forums and research allocations.
  • Maintain the financial integrity of TMA and ensure compliance with all accounting, legal, contractual and fiduciary obligations.


Professional Qualifications & Personal Characteristics

  • Passion for the mission of TMA and heartfelt compassion for those living with myositis and their caregivers.
  • A proven track record of nonprofit management, with excellent organizational and team-building skills. Specific experience in rare disease or health care is a plus.
  • Demonstrated success in fundraising, including major gifts, corporate funding, grant writing and grass roots campaigns.
  • Excellent interpersonal, listening, and communication skills. A leadership style that encourages collaboration between stakeholders.
  • Ability to build rapport and work effectively in partnership with non-profit boards of directors and within committee structures.
  • Experience in creation of innovative programs to engage and expand communities.
  • Successful origination and maintenance of mutually beneficial relationships with corporate funders.
  • Understanding and appreciation of the roles of NIH, biopharma and academia in life science research programs.
  • Budgeting, accounting and financial management experience.
  • Minimum of a bachelor’s degree in a relevant field.


Location & Compensation

TMA is currently headquartered in Alexandria, VA, though a remote work arrangement can be an option for the right candidate. Conditions permitting, a portion of the Executive Director’s time will be required for travel in pursuit of the organization’s mission.

Salary is commensurate with experience. A competitive benefit package will be provided.


The Myositis Association is committed to the principles of equal employment opportunity and to compliance with the law. It is TMA’s policy to provide equal employment opportunity and to make all employment-related decisions without regard to race, sex, age, marital status, sexual orientation, religion, national origin, or disability. 

Application Process

The search for the Executive Director is being conducted for TMA by the Moran Company. To apply for this position, submit cover letter and resume to Steven Byers, The Moran Company. 



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