Welcome to the Huntington Society of Canada’s Media Centre. Here you will find the latest and most comprehensive information about Huntington disease (HD). This section of our website is devoted to serving the needs of media professionals who need accurate information about HD and its effects on individuals, families, and our communities.
For interviews and comments or stories and news on the latest issues, including announcements relating to Huntington disease research, contact: HSC Communications at 519-749-8491 ext 130 or at firstname.lastname@example.org.
What is Huntington Disease?
Huntington disease (HD) is a genetic brain disorder that DESTROYS LIVES. It is like having Alzheimer’s, Parkinson’s and Schizophrenia all in one disease.
HD causes cells in specific parts of the brain to die. As the disease progresses, a person with Huntington’s become less able to manage movements, recall events, make decisions and control emotions. The disease leads to incapacitation and, eventually, death.
HD is also a disease of families. A child born to a parent with HD has a 50% chance of sharing the same fate and all family members have the burden of watching their loved ones slowly die. One in every 7,000 Canadians has Huntington disease, but one in every 1,000 Canadians is touched by HD, whether they have the disease themselves, look after someone who does, or have a friend or relative with HD.
Males and females have the same risk of inheriting the disease and HD occurs in all races. Primarily, HD affects adults. Symptoms usually appear between the ages of 30 and 50, but the disease can first appear in children as young as five, or in adults in their 70s. HD remains incurable, and there are currently no effective treatments; but there is substantive hope.
In 2006, Canadian researchers were able to stop the progression of HD in mice. This is the first time in the world such a breakthrough has been possible. Earlier in 2012, Dr. Sipione, from the University of Alberta, showed that injecting ganglioside GM1 into the brains of HD mice can reverse the motor symptoms of the disease. Her experiments provide evidence that it might be possible to develop drugs to reverse at least some of the effects of HD in humans.
In May of 2012, Dr. Ray Truant, of McMaster University, revealed a link between this fatal neurodegenerative disease and Alzheimer’s disease, a link that may point to potential drug targets for both diseases.
An historical overview of the Huntington Society of Canada (HSC)
HSC was founded in 1973 by Ralph and Ariel Walker from Cambridge, Ontario. Our Charitable Registration Number is 11896 5516 RR0001. We are a private health charity that aspires to a world free from Huntington disease.
Family is at the heart of our community. Our families and volunteers tell a powerful story of caring people who pull together to improve the quality of life of Canadians impacted by HD. We maximize the quality of life of people living with HD by delivering services, enabling others to understand the disease, and by furthering research to slow and to prevent Huntington disease.
Strengthen families as they cope with each progressive loss, thanks to a network of HSC Resource Centres and family service professionals across the country.
Provide programs, support groups, retreats, in-service seminars, counselling, resource materials, and referrals for those who are affected by HD.
- Educate healthcare professionals about HD through seminars, care manuals, and resources.
- Partner with globally respected research organizations on research into areas that hold the most promise for a treatment.
- Offer postdoctoral graduate scholarships to encourage more young scientists as they begin their careers.
- Lead volunteer chapters and area representatives from coast-to-coast.
- Strive to maximize community inclusion through a year-round, national, public awareness campaign.
Services – The HSC Family Services program provides support to individuals, families, and professionals as they face the many challenges encountered throughout the progressive course of Huntington disease (HD), as well as caregivers and those living at-risk across Canada. 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, Resource Centre Directors, and Family Services Workers.
The program includes:
- Direct support services
- Education and support
- Local community development
- Support to HSC’s national advocacy efforts
Research – HSC is dedicated to furthering research to slow and prevent HD. As well as attracting Canadian scientists to HD research, HSC is involved in all facets of the research spectrum. The Society works with other partners through various research programs to foster basic science about the underlying pathology of HD as well as to support clinical trials to test new treatments. Canadian researchers funded by HSC continue to play key roles in the international drug discovery process. The Society’s Research Council, which is comprised of leading scientists, reviews grant applications and provides scientific direction.
Support Networks – Across Canada, HSC has over 30 volunteer chapters and area representatives providing support to the many families affected by HD. These volunteers are active in a broad range of public awareness, educational support, and fundraising activities for families, health care professionals and the general public. This enables the Society to reach out to those who are often isolated and alone. HSC is a founding member of the International Huntington Association, representing members in more than 35 countries around the world.
To learn more about the Society and to read a copy of our annual report, click here.