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National Activities

Providing support and help to individuals with HD and their families is at the heart of the Huntington Society of Canada, both nationally and locally. HSC works with individuals, families and health professionals to let people know they are not alone, to share ideas on coping, to connect people to services, to give each other encouragement and hope, and to provide accurate information on HD. Work done by the National office is often followed-up at the local level for maximum effectiveness. In addition to funding research and developing and supporting chapters across the country, the Huntington Society of Canada manages three other major activities:

Support to Families

Education and Public Awareness

Fund Raising

Support to Families

HSC believes that when we all work together, many things can be achieved.

there is hope and things can be changed

a diagnosis of HD is not a death sentence; quality of life can be improved

a continuum of care is essential for all family members

To help provide care, HSC created and continues to develop a network of support across Canada, which includes chapters and area representatives, resource centres and support workers. This network offers programs and services to help all members of the HD family:

Outreach

From time to time our Resource Centre Directors make outreach visits to other communities in their provinces. On these visits, they meet families and health professionals and provide information and support.

Day Programs

In several cities across the country HSC runs social/recreational programs for individuals with Huntington disease. These provide an enjoyable outing for the person with HD as well as respite for the family.

Support/Discussion Groups

A number of Support/Discussion Groups are held on a regular basis across Canada. They are facilitated by our social workers and provide an opportunity for families to share information and coping strategies and to offer support to one another.

Summer Camps

The Society offers several week-long summer camp programs which allow people with HD an opportunity to take part in social and recreational programs. The camp experience allows those with HD to re-discover their abilities, and participate in group discussions to talk about their frustrations and fears with others who share their feelings. The camps also offer a respite for caregivers.

Housing

Working with local staff and volunteers, we investigate potential supportive housing arrangements for people in the mid-stages of HD. The Society's approach is to work with established housing agencies and have them develop housing initiatives on our behalf. These organizations are experts in pertinent legislation, funding and staffing.
We also help identify long-term care facilities which have, or are willing to take, a special interest in HD. Our professionals help their staff develop techniques and strategies which meet the unique care needs of those with advanced HD.

Annual Conference

Every October, representatives of our cross-Canada network gets together for one weekend to share ideas, keep abreast of current research and care strategies, conduct Society business at the Annual General Meeting, celebrate the successes of the past year, and plan for the future.

Education and Public Awareness

Knowledge is power. Information gives people power and control over their lives and work. Current information is made available to families, professionals and the general public through our highly respected library of educational materials. A national awareness campaign is conducted every May and public awareness activities occur throughout the year.

Education

HSC is committed to making accurate, up-to-date information available to families and professionals across Canada. We:

work with local social service staff and chapters and area representatives to offer one-day provincial conferences of particular interest to professionals

act as a resource to social service staff and volunteers to plan inservice programs for health and community service workers and staff of long-term care facilities

distribute vital information to key professionals across the country

publish a wide range of low-cost printed and audio/visual materials for families and professionals:

the leading HD quarterly newsletter, Horizon

booklets, brochures, articles and care manuals on many aspects of HD

teaching videotapes (including some award-winners!)

Please note: Many of our publications have been translated into several languages. Through an excellent sharing process fostered by the International Huntington Association, member countries are encouraged to use materials produced by other countries to avoid duplication of effort and to maximize the limited resources available. The Huntington Society of Canada requires that appropriate acknowledgement be given to HSC when material, including information gathered from this website, is reproduced.

Public Awareness

The Huntington Society of Canada offers a wide range of services to increase awareness of HD by:

producing public awareness materials for use across Canada (e.g. posters, pamphlets)

coordinating "Huntington Disease Awareness Month" across Canada every May

distributing public service announcements to all radio and television stations

distributing camera-ready public service advertisements and press releases to most newspapers and magazines across Canada

providing speakers for service clubs, professional groups, church groups, etc.

creating videos on Huntington disease

distributing Horizon, our quarterly newsletter, and chapter newsletters

keeping a file of HSC members willing to talk to the media about HD and the Society

linking media professionals to HSC spokespeople, when possible

maintaining this website

Fund Raising

Fund raising is a vital part of the financial health of the Huntington Society of Canada. Thanks to the generosity of many donors, who collectively donate approximately $1.5 million annually, the Society is able to carry out its important programs in research, education and public awareness, individual/family services and chapter development.

National's activities include sending general appeals and requests for specific support of the Society's programs and working with area representatives and chapters to develop special requests for projects in their areas. National office provides support, encouragement, advice and materials to local groups to help in their fund raising projects.

Funds are raised through a variety of campaigns initiated by the National Office throughout the year. These include individual appeals, a planned giving program, special events (e.g. Amaryllis Campaign, Indy for Huntington's and Dress Down Days.)

Over the years, the Society has also formed lasting partnerships with a variety of corporations, foundations, employee groups and service clubs in the fight against HD.

Volunteer chapters and area representatives across Canada organize their own fund raising events, such as bingos, casinos, door-to-door campaigns, Nevada (break-open) tickets, and sales, to raise money.