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Position Profile

Executive Director

HD Reach

www.HD Reach.org

Raleigh, NC


Founded in 2009, HD Reach is a local, “boots on the ground” nonprofit working to improve the care and quality of life of those affected by Huntington’s disease (HD) in North Carolina. We provide connections to local services, care management, family support, and education, including information about HD, streamlined access to quality providers, crisis intervention services, case management, timely diagnosis and disability approval, family education and support, attention to the behavioral and psychiatric symptoms of HD, and guidance through the long term and hospice care process. Our vision is to aid ALL PEOPLE with Huntington’s disease and their families, and ultimately to bring their suffering to an end. The opportunity to make a difference for HD families energizes our efforts because we know that the rewards will be great.


Reporting to the Board of Directors, the Executive Director (ED) will be responsible for executing the HD Reach mission including strategic initiatives, expansion activities, staff supervision, and implementation of HD Reach programs. These responsibilities will require a thorough understanding of core programs, operations, and strategic goals.

The ED will be thoroughly committed to HD Reach’s mission: action-oriented, entrepreneurial, adaptable, out-going, amicable, and possessing an innovative approach to business planning. All candidates should have proven leadership, coaching, and relationship management experience.

Essential duties and responsibilities of the position include, but are not limited to, the following:

Leadership and Management:

  • Ensure ongoing programmatic excellence, evaluate programs for impact, and prioritize opportunities to address unmet needs within the HD family community
  • Manage daily operations, including administration, finance (as directed by Treasurer), communications, strategy, and work systems; recommend timelines and resources needed to achieve strategic goals
  • Effectively lead, coach, develop, and retain HD Reach staff and volunteers
  • Measure successes that can be effectively communicated to the HD community, board of directors, funders, and other constituents


  • Persuasively engage and actively energize others in achieving the mission and vision of HD Reach
  • Deepen and refine all aspects of communications—from social media to external relations with the goal of creating a stronger brand
  • Be an external presence that aids in publishing and communicating program results with an emphasis on the successes of the local program as a model for regional and national replication
  • With the Board Chair, act as spokesperson for the organization to the public and all stakeholders


  • Adapt best practice fundraising techniques to the unique challenges posed by low prevalence, low awareness, and the mental health and inherited nature of HD
  • Expand local, regional, state-wide and national revenue generation to support existing program operations and future growth
  • Develop donor information systems with the goal of improving process of donor engagement and retention; expand and streamline crowd-funding opportunities for HD Reach’s constituents
  • Use external presence and relationships to garner new opportunities and increase awareness of HD Reach

Planning and New Business:

  • In conjunction with the Board of Directors, design the statewide expansion and complete the strategic business planning process for the program expansion into new markets
  • Build partnerships in new markets, establishing relationships with the funders, and political and community leaders at each expansion site
  • Seek out and prioritize strategic opportunities for future HD Reach services in an orderly and cost-effective way


To perform this job successfully, an individual must be able to perform each essential duty satisfactorily. The ideal candidate will also demonstrate the following knowledge, skills and abilities:

  • Experience at a leadership level in either a nonprofit or business; track record of effectively leading and regionally and/or nationally scaling a performance- and outcomes-based organization and staff; ability to point to specific examples of having developed operationalized strategies that have taken an organization to the next stage of growth
  • Demonstrated ability to develop, measure, and respond to impact indicators and other measures of success
  • Excellence in organizational leadership with the ability to coach, manage, and develop high-performance team(s) comprised of individuals from diverse backgrounds
  • Strong marketing, sales and/or fundraising experience with the ability to engage a wide range of stakeholders and cultures
  • Strong written and verbal communication skills; a persuasive and passionate communicator with excellent interpersonal skills
  • Ability to work effectively in collaboration with individuals of all socio-economic, educational, ethnic and cultural backgrounds
  • Demonstrated passion, idealism, integrity, optimism, resourcefulness and self-direction
  • Experience in Huntington’s disease, neurodegenerative disorders, palliative care, or disease-specific integrative care preferred

The target hiring salary for this position is $90,000. HD Reach offers an annual health stipend for salaried employees of $5,000/year. Paid time off and personal leave are also offered.

This position is hybrid remote and on-site at this time. HD Reach maintains a virtual office; the Executive Director is expected to participate in in-person meetings and events primarily in Raleigh. Ideally, the ED will be located in the Raleigh or Charlotte area to access program activities.


HD Reach has contracted with Capability Company Consulting to support the search process. Please send 1) a cover letter linking your skills and experience to this position description, 2) your resume, and 3) contact information for three to five professional references to: HDReachED@CapabilityCompany.com. Review of applications will begin 5:00 PM, October 13, 2023.