Chair Job Description


Job Title: Chair – Huntington Study Group (“HSG”)

Summary: Responsible for providing strategic leadership for the HSG by working with the HSG Board of Directors, HSG Executive Committee, and the HSG Executive Director to establish and realize an HSG strategic plan, long-range plans and policies by performing the following duties:

Duties and Responsibilities include the following: Other duties may be assigned.

  1. Raise funds and actively solicit and bring new clinical trials to carry out the HSG’s mission
  2. Establish credibility throughout the organization and with the Board as an effective advocate and developer of solutions to the research, education and business challenges related to improving understanding of and treatments for Huntington disease (“HD”).
  3. Provide leadership and management to ensure that the mission and core values of the HSG are put into practice.
  4. Motivate and collaborate with the HSG executive management team to develop and implement plans for the operational infrastructure of systems, processes and personnel designed to accommodate the objectives of the HSG.
  5. Oversees the HSG Executive Director and interacts with the staff on the strategic plan initiatives, make recommendations on operational issues, help with staff recruitment and provide counsel as needed to the Executive Director on staff issues.
  6. Review and approve along with the rest of the board the HSG’s annual budget, audit reports, and material business decisions; being informed of, and meeting all legal and fiduciary responsibilities.
  7. Appoints other members of the Board, including the Treasurer and independent Board member.
  8. Appoints additional members of the Executive Committee and chairs and co-chairs of various HSG committees.
  9. Outreach with key stakeholders including families, sponsors, members and advocacy partners.
  10. Chair the HSG Executive Committee and HSG Board of Directors, and designate non-elected positions of the Board and other HSG Committees, as set forth in the Bylaws.


  1. Extensive experience with HD related to the HSG’s mission of seeking treatments that make a difference.
  2. Successful leadership and management experience in the non-profit and/or for-profit sectors.
  3. Record of service to the HD community.
  4. Personal qualities of integrity, credibility, and a passion for improving the lives of all HD affected individuals and families.

Compensation: $50,000 per year, subject to annual review

Key Activities and Estimated Hours required for performance the Duties and Responsibilities:

Key Activities Chair


Chair/Staff Meetings 86
Board Meeting 12
Annual Meeting 24
Unplanned conference calls, teleconference or other unplanned activities 8
Executive Committee Meeting & Activities 6
Meet Pharma/Sponsors/Stakeholders 92
Special Projects 40
Sponsorships/Fundraising 80
Total Hours 348
Total Weeks 9
Hours per week 8