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About the Huntington Society of Canada |
The Huntington Society of Canada (HSC) was founded in 1973 by Ralph and Ariel Walker in their home town of Cambridge, Ontario. Since then, HSC has grown into a strong national organization with 60 volunteer chapters and area representatives across the country and professionally-staffed Resource Centres in most provinces.
The Huntington Society of Canada is a national network of volunteers and professionals working together to find new treatments and, ultimately, a cure and treatment for Huntington disease, and to improve quality of life for people with Huntington disease and their families.
HSC sponsors basic and applied research that will enhance our understanding of Huntington disease, and advance the search for new treatments and a cure.
To that end, the Huntington Society of Canada has funded scientific and clinical investigations since 1977, and is committed to increasing its role in the international research effort until a cure for Huntington disease is discovered.
To help provide care, HSC created and continues to develop a support network across Canada, which includes chapters and area representatives, Resource Centres and support workers. This network offers the following programs and services to help all members of the HD family:
We are committed to making accurate, up-to-date information available to families and professionals across Canada and to increase public awareness of HD.
The Huntington Society of Canada is a national network, governed by a volunteer Board of Directors and supported by staff at the national office. There are also professional social work staff at nine Resource Centres and the Huntington Society of Quebec. In addition, nine part-time social workers are available on an on-call basis to provide support to HD families in several areas of the country.
The Huntington Society of Canada is a founding member of the International Huntington Association.
The national office staff provide a range of services and support to the Society's volunteers. National activities include developing and supporting chapter activities, establishing and supporting Resource Centres, creating publications and videos for education and public awareness, developing and directing public awareness and fundraising campaigns, and administering the Society's research programme.
National staff answer requests for information about HD from families and health care professionals across Canada, and make referrals to local chapters, area representatives and social service staff. For general enquiries, email us at [email protected].
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. This includes the Society's mission and strategic planning, policy development, stewardship of resources, and accountability to members, donors, and the public. The Executive Director, who is the senior paid staff person, reports directly to the Board.
It is important that the Board is representative of constituent groups and regions, and of a broad range of skills and expertise: for example, volunteer and chapter development, fundraising and public awareness, as well as law, administration and finance.
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 Board by the Nominating Committee.
List of the current Board of Directors.
The Research Council is composed of leading scientists and clinicians with expertise in such disciplines as molecular biology, genetics, cell biology, neurology, biochemistry, psychiatry, pharmacology, animal models, and imaging techniques. Members of the Council are volunteers, serving without remuneration, and they serve the HD community by evaluating applications for research grants; developing policy and funding recommendations for the Board of Directors; and serving as a point of contact between the research community and the Society�s membership.
List of the current Research
Council.
The mission and goals of the Society are carried out in communities across Canada by volunteers. 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 as time and resources permit, undertakes public awareness and fund raising activities.
When sufficient people and interest have been identified, the group often chooses to form a Chapter. A Chapter is a more formal group of people, consisting of members, committees and an executive. Chapter activities include providing local families and health professionals with information, support, raising funds and public awareness, and supporting local day and outreach programs. They also have lots of fun with their picnics, potluck dinners and socials.
List of chapters and area representatives across Canada.
HD Resource Centres are staffed by trained professionals. They assist families and professionals in dealing with the many different needs and concerns encountered while dealing with Huntington disease. This may include information, counselling, referral or discussion groups for family members. Resource Centres provide in-service education seminars to professionals in health care facilities and community agencies. Some centres offer a weekly, semi-monthly or monthly day activity program to help people with HD maintain involvement in social/recreational activities.
Support workers are trained professionals who offer crisis counselling, referral, in-service presentations to professionals, and leadership of a bi-monthly family discussion group. The role of the Society's social service staff complements the activities of the chapters and area representatives in providing information and support to families and professionals. Referrals are made back and forth, with complete respect for confidentiality and dependent on the needs of the individual.
The Huntington Society of Canada has approximately 60 volunteer area representatives and chapters across Canada. Our volunteers support the fight against HD in many ways. They raise funds to support our much-needed programs, work to increase public awareness of the HSC and Huntington disease, and provide social supports for individuals living with HD and their families. Whether you are interested in one project for a short time or in making a longer-term commitment, we have a volunteer job that will suit you. Whatever time you can give, in any way, will make a big difference to our families who must live day-to-day with Huntington disease.
Here are a few sample volunteer jobs available in your community.
Coin Box Campaign Coordinator: Help us by volunteering to distribute coin boxes to local stores in your community. They raise funds and awareness, and it only takes a few hours a month to service the box.
HD Indy - Go Kart Challenge Captain: Help recruit teams to enter our HD Indy. This event is held each September at tracks across the country. Approach your family, work colleagues and friends to enter teams and collect pledges. This will take a couple of hours a week over the months of July, August and September.
Materials Coordinator: Distribute posters, brochures and other educational materials to public libraries, doctors' offices, pharmacies and other public places. This position requires a time-commitment of one to two hours per month throughout the year.
Social Coordinator: Help to organize social outings for people living with HD. This position requires a monthly time commitment of two to three hours.
There are many more opportunities if you live in an area where a chapter of the HSC exists. Please contact your local chapter or email our Director of Chapter Development for more information.
Membership in the Huntington Society of Canada costs $25 per year. Members receive Horizon, our national newsletter, four times per year, and are entitled to vote, in person or by proxy, at the Annual General Meeting held each October.
Membership payments can be made to any chapter of the Society or the national office.
Donations to the Society help to ensure that our programs in research, education and individual/family services can continue.
To make a donation to the Society, contact your local chapter, Resource Centre or the national office. The Society accepts cash, cheques, Visa and Mastercard. For more information, please contact our Director of Development.