Family is at the heart of our community.
At the Huntington Society of Canada (HSC), we understand what you are going through, whether you have the disease yourself, are caring for someone with HD, are gene positive or are at-risk of inheriting HD. We are a not-for-profit charitable organization which raises funds to deliver counselling and other support services to individuals and families living with Huntington disease (HD). The Society works with health and social services professionals to enable them to better serve people living with HD. We also fund medical research leading to treatments that will delay or stop the progression of the disease.
What the Family Services Team at the Huntington Society of Canada offers: The HSC Family Services Program provides support to individuals, families, and professionals as they face the progressive course of Huntington disease (HD). We also support caregivers and those living at-risk. The Family Services Program strives to maximize quality of life and to assist with meeting urgent needs. Services are provided through a Director of Family Services, a Coordinator of Family Services, Resource Centre Directors, and Family Services Workers. The Director of Family Services manages the program across Canada. The Coordinator of Family Services, a full time staff position at the national office, assists in the coordination and integration of the activities and services of the program and supports the Resource Centre Directors and Family Service Workers. Resource Centre Directors are full or part-time permanent staff that provide a range of services within large geographic regions that include highly populated areas. Family Service Workers are contract staff that provide priority services of the program within specific geographical areas. The Family Services program includes:
- Direct support services
- Education and support
- Local community development
- Support to HSC’s national advocacy efforts
Direct Support Services
Direct support services are available to anyone who is affected by Huntington disease:
- Persons with HD
- Persons at-risk
- Persons who are gene-positive
- Caregivers and family members
- Community members, friends and neighbors
Information and Education – Information is provided about the nature and progression of HD and care strategies.
Short-term Counseling – Counseling is available to address emotional and practical adjustments to the changes one may experience while living with HD.
Resource Counseling and Referral – Information is provided about community resources available to help meet specific individual needs.
Individual Advocacy – Support is available to work with service providers and individuals to help ensure access to the necessary services.
Mutual Support – Provide opportunities for individuals with HD and family members to connect with others i.e. support groups.
Partnerships – The Family Services team works in partnership with local HD Clinics, Movement Disorder B, Clinics and Genetics Clinics to enhance service delivery.
- Staff at hospitals, mental health centres, long-term care facilities
- Home care staff, counsellors, physicians and other health and social service workers may all participate in the care.
- Community support groups or agencies
- Community workers such as lawyers, police, staff involved in the justice system
Education and support to health, social service and community workers includes:
- Information and education
- Individual consultation
- Links to other professionals
Community development activities include:
- Foster an awareness and understanding of Huntington disease
- Liaise with other professionals and organizations to improve the services
- Collaborate with other service providers and government to expand existing services
- Develop new services
The Family Services team supports HSC’s participation in activities that focus on systemic change to enhance the social, political, and environmental conditions that contribute to the well-being of individuals with HD and their families. To learn more about our advocacy efforts please click here.