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Make a Difference in the Lives of those Affected by Huntington Disease.

The Huntington Society of Canada (HSC) is a nonprofit, charitable organization which raises funds to deliver individual and group counseling services to support individuals and families living with Huntington disease (HD) and to fund medical research to delay or stop the progression of the disease. The Society also works with health and social service professionals to enable them to better serve people living with HD. The Society’s national office is located in Kitchener, Ontario with regional offices across Canada, which deliver support to families and individuals, plus 30 volunteer groups, or Chapters, engaged in fundraising. HSC raises approximately $4 million, annually, through a diversified fundraising portfolio, e.g., direct mail, personal calls, and special events.

We currently have one position available. Thank you for your interest.

Chief Executive Officer (Kitchener)

For more than four decades HSC has strived for excellence by providing practical help for families grappling with HD, increasing national and international awareness of HD, advocating for public policy change including genetic fairness, and investing in cutting edge Canadian biomedical and clinical research to slow and prevent this disease.

HSC is a unified organization that connects a community of Canadians including researchers, donors, advocates and the HD Community to change the reality of families living with this neurological disease.

With the retirement of its CEO, HSC is looking for its next leader.

The Position:

The Chief Executive Officer (CEO) is responsible for the management of all aspects of the operation and services of the Huntington Society of Canada. The CEO leads the overall strategic direction and is accountable for human resources, all programming, property and finances. The CEO reports directly to the Board of Directors of HSC.

Experience & Education

  • Ten years or substantial senior management experience in a not for profit with proven general management skills (ideally managing a senior team) and operational skills.
  • Experience that demonstrates strong business & financial acumen
  • Proven relationship management skills and strong political acumen and the ability to work successfully with a variety of stakeholders including: the Board, government, the heads of other charities, high net worth donors, scientists, staff and family members.
  • Strong understanding of working in an intimate work environment (medium sized charity) and is known to be comfortable with all operational aspects of the organization while keeping a focus on the big picture and strategic direction.
  • Excellent presentation and interpersonal skills; must be comfortable as the “face” of HD in Canada while being its chief ambassador.
  • Ability to interface with all levels of government, sector and industry leaders.
  • Identify, cultivate and steward major donors and potential donors.
  • Experience working in an industry-related not-for-profit disease charity, dealing with multiple stakeholders.
  • Excellent communication, facilitation and conflict resolution skills.
  • Experience working well with researchers and scientists and understanding of research funding.
  • Ability to understand complex processes and medical/scientific issues and communicate them in laymen’s terms.
  • Post secondary degree.
  • Master’s degree OR a degree or diploma in business is an asset.

Core Competencies and Attributes

  • Collaborative, innovative and confident leadership style that inspires, educates and motivates staff and stakeholders.
  • Superior relationship building skills.
  • A strong decision-maker.
  • Sound judgment and integrity with the ability to anticipate opportunities and challenges.
  • A visionary thinker with highly developed communication skills.
  • Strong ability to appreciate and benefit from diversity.


  • Proven fundraising success.
  • Ability and inclination to travel (average two trips / month).
  • Values commitment to diversity.
  • Experience working with appropriate government organizations (federal and provincial).

This search is being conducted on behalf of The Huntington Society of Canada by crawfordconnect, a search firm specializing in recruiting leaders for Canada’s non-profit sector. If someone you know may be interested in this position please feel free to forward this document – we’d be pleased to connect with them.

Submit your application, by visiting here. 

Select the ‘Apply for this Position’ tab to upload your cover letter and resume by February 5, 2018. For technical issues, please reach out to

For additional information please reach out to Susan Mackle at  at 1.647.265.8508 or 1.866.647.5149.

We request all cover letters and resumes be submitted in one document online only.  We thank all applicants for applying, however, only qualified candidates selected for an interview will be contacted.

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