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The Huntington Society of Canada is a registered charity governed by an elected Board of Directors. We work closely with the Huntington Society of Quebec, a separately incorporated organization.
Our National Office is located in Kitchener, Ontario where our staff coordinate the Society's activities across the country. This centralized structure keeps our administrative and fundraising costs low, averaging less than 15% of our total budget.
Across Canada, nearly 50 volunteer chapters and area representatives work for the Huntington's cause at the local level and raise nearly half of our annual revenue.
Click here to access the HSC Strategic Board Report and our Annual Report.
Anyone can become a member of the Huntington Society of Canada. The annual, tax-deductible membership fee is $25.00 per person, while a lifetime membership is $250.00. Membership runs on a calendar year, from January to December.
• a subscription to our newsletter Horizon
• notices of meetings and other special mailings
• the right to vote at the Annual General Meeting (or by proxy)
• a tax receipt
It is especially important for every chapter leader and area representative to be an official member of the Huntington Society. Our charitable status (which allows us to issue tax receipts) depends on having a strong membership.
To become a member, simply call the National Office! Or download a membership form ,fill it out and return it with a cheque for the appropriate amount, stating clearly that the amount covers membership dues.
The Huntington Society of Canada owes most of its success to the work of volunteers at both the local and national levels.
Board of Directors
Our National Board of Directors consists of 14 volunteers from across Canada elected by our members at the Annual General Meeting. Nominations are recommended to the general membership by the Board's Nominations Committee.
The Board is responsible for governing the Society, which includes:
• strategic planning
• developing policy
• stewarding our resources
• providing accountability to members, donors and the public
Board members serve a three-year term, which may be followed by a second three-year term. After that, they must take a one-year leave. A few vacancies occur each year, since members' terms are staggered.
The elected Board appoints its officers (Chair, Vice-Chair, Secretary, Treasurer). Some Board members bring specific professional expertise, such as a knowledge of finance, law, human resources, management or corporate fundraising.
Others serve as regional representatives, keeping in touch with the needs of the region. They can also be helpful to identify and pursue special opportunities for development.
Area Representatives are people who volunteer to act as a local contact for the Huntington Society. They play an active role in one or more of the following:
- informal support
- public awareness
Sometimes, area representatives help their local Resource Centre Director or Individual and Family Services staff provide information and support to local HD families and health care professionals.
Chapters are formed when there are enough people in a geographic area to handle the various responsibilities described in the Getting Started section. Like area representatives, chapters may support the work of the local Resource Centre Director or Individual and Family Services staff person.
Each Chapter and Area Representative has a primary contact at the National office who will can assist them with any question to do with Huntington Society of Canada business or link them to the person in the office to best assist them with their questions. If you are new to the society just call the National Office at 1-800-998-7398 and you will be directed to the right person.
Individual and Family Services (IFS) staff are trained professionals who help families and health professionals to deal with the needs and concerns created by Huntington disease. This may include:
• providing information, counseling and referrals
• helping families to navigate the health care system
• facilitating discussion groups for family members
• consulting with health care professionals to help them provide the best possible care to individuals with HD and their families
Our staff also provides in-service education seminars to professionals in health care facilities and community agencies. All Resource Centre Directors report directly to National Office.
If you'd like an update about the services program in your community, just contact your nearest IFS staff person.
Our Strategic Plan
All of the Huntington Society's activities are outlined in a strategic plan that guides our Board, staff and volunteers, providing a clear roadmap to where the Society is going.
While the Board of Directors is ultimately responsible for setting the strategic directions of the Society, members' input is gathered through a variety of participatory methods. Our staff also contributes ideas about strategic directions, opportunities to be pursued and objectives to work towards.
Together, we develop a comprehensive strategic plan that responds to community needs and priorities and takes into account the necessary staff and financial resources. The collaborative process ensures a strategic "living" plan with grassroots involvement and support.