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Connections and Support in Canada |
There are 60 volunteer chapters and area representatives of the Huntington Society of Canada across the country, including a separate legal entity in Quebec (Huntington Society of Quebec.) There are also professionally-staffed Resource Centres in most provinces and nine additional social workers to provide support to HD families. Support can be obtained in both of Canada's official languages.
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 rep 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 National staff assists the group in forming 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 inservice 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, inservice 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 to confidentiality and dependent on the needs of the individual. National staff answers requests for information about HD from families and health professionals across Canada, but we also refer them to the nearest chapter, area representative and social service staff person, where available. We have an up-to-date list of specialists, particularly in neurology and genetics across Canada, to whom families can be directed.
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. We raise funds to support our much-needed programs, approach the media 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 a longer-term commitment, we have a volunteer job that will suit you. Perhaps you are interested in becoming an area representative in your community? We still have many areas of the country that are unrepresented. 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.
Indy for HD - Go Kart Challenge Captain > Help recruit teams to enter our Indy for HD. This event will be held September, 1998. 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 1-2 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 2-3 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 National Office at (519) 622-1002 for more information.
Membership in the Huntington Society of Canada costs $15 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 insure 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 and Visa.
Several Canadians would like to make connections with other people interested in Huntington disease to exchange information and provide mutual support.
The Huntington Society of Canada provides this list as a service only. Inclusion does not constitue an HSC endorsement.
Contact HSC to have your name listed here.
Rob Laycock