Co-Chair Job Description


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

Summary: The Co-Chair is responsible for assisting the Chair in carrying out their overall duties and responsibilities. If the Chair becomes disabled or incapacitated, the Co-Chair will assume the duties and responsibilities of the Chair. The Co-Chair will help to carry out the HSG mission by performing the following:

Assist the Chair in the following activities:

  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. Oversight of the HSG Executive Director and interacting with 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. Outreach with key stakeholders including families, sponsors, members and advocacy partners.

The Co-Chair shall also have direct responsibility to:

  1. Work with HSG Treasurer and Independent Board Member to create a fully transparent and accountable HSG Audit Committee.
  2. Chair the HSG Credentials Committee to promote HD clinical research career development, and attracts, recruit and retain HSG credentialed research sites, credentialed investigators and coordinators, and other clinical practitioners.
  3. Perform any additional duties as directed by the HSG Chair.


  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: $25,000 per year, subject to annual review

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

Key Activities Co-Chair


Board Meeting 12
Annual Meeting 24
Unplanned conference calls, teleconference or other unplanned activities 8
Executive Committee Meeting & Activities 6
Credentials Committee Meeting & Activities 18
Scientific Affairs Committee Meeting & Activities 8
Audit Meeting 6
Meet with Pharma/Sponsors/Stakeholders 30
Special Projects 30
Sponsorships/Fundraising 30
Total Hours 172
Total Weeks 4
Hrs. per week 4