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The Huntington Society of Canada (HSC) is a national network of volunteer Chapters and Area Representatives, governed by a volunteer Board of Directors, and supported by full- and part-time staff at the Society's office.
The network includes professional Individual and Family Service (IFS) staff across the country at 10 Huntington Disease Resource Centres across the country , and 14 part-time IFS workers who are available on an on-call basis to provide support to HD families in areas of the country not served by a Resource Centre.
HSC's network also includes the Huntington Society of Quebec. There is effective communication and collaboration between both organizations as independent organizations working harmoniously in the fight against Huntington disease.
Board of Directors
The Board of Directors is comprised of volunteers elected by the members at the Annual General Meeting. The Board is responsible for governing the Society, which includes: the Society's mission and strategic planning; policy development; stewardship of resources; and accountability to members, donors, and the public. The Executive Director and CEO, who is the senior staff person, reports directly to the Board.
Board members serve a three-year term, which may be followed by a second three-year term, after which a one-year leave is required. A few vacancies occur each year, since members' terms are staggered. Nominations are recommended to the membership by the Governance Committee of the Board.
The Society's office is located in Kitchener, Ontario -- 1-800-998-7398.
Staff are there to assist the Society's volunteers and staff across the country. No matter what your concern, staff are there to help you. The following is a list of staff and their responsibilities.
As part of an integrated strategy, the Huntington Society of Canada provides immediate support for families living with the devastating effects of Huntington disease through our Individual and Family Services program. With a network of 24 staff located across Canada, HSC delivers approximately 280 hours of service to families every week.
Our professional staff are Huntington disease specialists who help families and professionals respond to the challenge of HD. The clients of the Individual and Family Services program are the person living with HD, their caregivers and family members including people at risk.
Chapter and Area Representatives
A Chapter is a larger and more formally constituted group of people, consisting of members, committees and an executive. Chapter activities include an annual program of fundraising and public awareness activities as well as providing local families and health professionals with information and supporting local day and outreach programs.
An Area Representative is a person willing to act as a local contact for the Huntington Society in his/her area. Working with other interested people, the Area Representative offers information and support to families and professionals, and undertakes fundraising and public awareness activities.
The Huntington Society is always looking for new volunteers who would be interested in giving their time to help in the fight against HD. Whether you are interested in one project for a short time, or in making a longer-term commitment, or in finding out more generally about volunteering with the Huntington Society, please feel free to contact us at the Society's office at 1-800-998-7398, or by contacting the Area Representative or Chapter nearest you.
The Research Council of the Huntington Society of Canada is comprised of leading HD research scientists with expertise in various areas of investigation. Council members are volunteers serving without remuneration. The Council analyzes and prepare recommendations about applications received for the NAVIGATOR research program. The Research Council also provides advice with respect to matters related to the Society’s role in funding Huntington disease research; including scientific advice about specific research projects and proposals which may be funded in concert with other national and international research funding bodies.