The Huntington Society of Canada has made some amazing strides in many areas. Since founded, in 1973, over $30 million dollars has been invested in research and services. Follow our progress over the years….
2016
- Leveraging $1 million donated by an anonymous donor to partner with Brain Canada, we have launched a $2 million transformative research initiative. This initiative will facilitate collaboration between HD researchers, HD clinicians and the HD community to expedite discovery of treatment to slow and prevent Huntington disease and other neurological diseases. We must now focus on filling the pipeline and funding discovery research leading to treatments.
- Progress is being made with Bill S201, An Act to prohibit and prevent genetic discrimination. On April 14, 2016 Senator Cowan’s Bill S201 was unanimously passed through the Senate to the House of Commons. On May 3, MPP Rob Oliphant, as sponsor of Bill
S201 in the House, tabled first reading in the House. The Canadian Coalition for Genetic Fairness was hoping that Bill S201 would see second reading and first hour of debate prior to the House rising for the summer, but that was not the case and the plan is for
the bill to have second reading on September 20th, 2016 in the House. - On June 24, 2016, the American Society of Human Genetics announced that Senator Cowan and Bev Heim-Myers (as Chair of the Canadian Coalition for Genetic Fairness) will be receiving the American Society of Human Genetics Advocacy award for
moving Canada forward regarding the protection of genetic test information.
2015
- Human clinical trials for the first huntingtin protein lowering drug have started. This is the first promising treatment to address the root cause of Huntington disease. The foundation has been laid for these and future clinical trials through our Clinical Trial Readiness Initiative, Be Brave, Be Bold, Be Ready, which will benefit the health of Canada’s HD families and strengthen our clinical trials infrastructure.
- We continue to increase supports for our youth through Young People Affected by HD (YPAHD), outreach, and our Youth Mentorship Program. We have expanded our world-leading youth mentorship program. We continue to create youth specific support materials, provide leadership opportunities for our youth, and encourage them be part of the global stage.
2014
- While research is paving the way to treatments, HSC’s Family Services team provides vital support to people living with the impact of HD right now. We are increasing the number of multidisciplinary HD clinics across Canada and expanding the services of others.
- We continue to work closely with the federal, territorial and provincial governments to end genetic discrimination by insurers and employers based on genetic test information in Canada.
- HSC creates the HD Clinical Trials Consortium to carve a new path for the research community and provide an opportunity for clinicians, the Huntington Society of Canada (HSC) and Canada’s Research-Based Pharmaceutical Companies (now Innovative Medicines) to partner in the outreach efforts to encourage participation in Huntington disease (HD) clinical trials.
2013
- The Huntington Society of Canada reaches its 40 year milestone, celebrating 40 years of providing services to those impacted by Huntington disease and funding research to help stop the progression of HD.
- Youth Mentorship Program is official launched attracting applicants from across the country.
- In 2013, as part of a five-year strategic plan, HSC invites researchers, scientists, and clinicians to work together and develop a comprehensive national strategy that will promote health research in Canada and ensure best practices are shared and knowledge transferred.
2012
- HSC funded researcher Dr. Simonetta Sipione, University of Alberta in collaboration with Dr. Ray Truant, McMaster University successfully reverses HD motor symptoms in a mouse model.
- Multidisciplinary Clinic is established in Newfoundland.
- Chapters in Grand River and Kingston/Belleville are established.
- HSC launches teamHD – a nation-wide running team for Huntington disease awareness.
- HSC successfully advocates the Ontario Government to add HD to the Special Diet Allowance list.
- Ontario Run for Huntington Disease raises a remarkable $85,000.
- HSC partners to launch the Huntington’s Disease Youth Organization (HDYO), a global organization to support children, teens and young adults impacted by HD.
- HSC works with Academy Award® winning director John Zaritsky and award-winning producer Kevin Eastwood to help launch the Canadian documentary Do You Really Want to Know?. This film follows three families as they decide whether or not to be tested for the HD gene mutation.
- HSC pilots an innovative Youth Mentorship Project.
- 3rd Annual Ride 4 a Cure in Grande Prairie raises more than $80,000, amazing!
- On the 38th anniversary of the first HD National Workshop in Toronto, HSC holds the first ever YPAHD Day, organized for youth by youth, held the day before National Conference begins.
2011
- HSC funded researcher, Dr. Ray Truant, McMaster University, discovers a common link between Alzheimer’s and Huntington disease.
- HSC sends six youth delegates to attend a special youth summit at the HDSA National Conference.
- In partnership with three other HD lay organizations, HSC helps launch and support HDBuzz.net the first platform of its kind. The resource website focuses on HD research news, written in lay terms by scientists for the global HD community.
- HD Educational Symposiums are launched. An educational web conference held in several cities across Canada.
- Family Services Worker position established for Barrie/Orillia Ontario area.
2009 – 2010
- New Canadian research by HSC funded researcher, Dr. Michael Hayden, suggests the prevalence of Huntington disease has been underestimated by 80%.
- Saskatoon Multidisciplinary clinic opens.
- HSC launches the Great Canadian Series honouring its first inductee, the late Honourable James Jerome, Speaker of the House of Commons from 1974 to 1979.
- HSC co-hosts the World Congress on HD in Vancouver, BC. Bringing together 700 clinicians, researchers, caregivers and Huntington’s families to share the latest in research and care.
- Peace Country Chapter is established.
- CCGF leaders holds a Lunch and Learn with leading researchers, and meet with more than 20 MPs from all parties to make the case for protection over the use of genetic information.
- HSC, through Neurological Health Charities Canada (NHCC), successfully lobbies for federal action to improve the lives of people with neurological conditions.
2008
- HSC establishes the Canadian Coalition for Genetic Fairness (CCGF) to educate Canadians about genetic discrimination and to influence provincial and federal governments to create positive change.
- HSC pioneers a national project, KIDS for HD, for children and families living with HD.
- Young People Affected by Huntington Disease (YPAHD) is established.
- HSC becomes a founding member of Neurological Health Charities Canada.
- HSC establishes the Stay Strong program, opening educational opportunities to people living with HD.
- Multidisciplinary clinic is established in Ottawa.
- HSC expands awareness outreach to remote communities by developing electronic bulletins and participating in social media platforms.
2003 – 2007
- Family Services expand in Ontario, Saskatchewan and Alberta.
- HSC breaks into new territory, offering support services to families in Nova Scotia.
- The Winnipeg based Movement Disorders Clinic is established providing a multidisciplinary approach of care.
- HSC funded researchers at the University of British Columbia stop the progression of HD in a mouse bringing us one step closer to finding a treatment.
- HSC expands support by adding more Family Service workers; new West Central Ontario position is created to service families in higher populated areas in Canada.
- Multidisciplinary Clinic opens in Nova Scotia.
- New Resource Centre opens in Newfoundland.
1998 – 2002
- Navigator Program launches – HSC research program that makes funding available to HD scientists across Canada.
- HSC surpasses $2 million in financial results increasing revenue in almost every category.
- The Family Fund, Champions of Hope and Shining Stars fundraising programs are launched.
- Manitoba holds its first Rally The Sleds HD event, raising over $30,000, making the Guinness World Record for the longest continuous line of moving snowmobiles.
- The Huntington Society opens the first Northern Ontario outreach Multidisciplinary clinic.
1993 – 1997
- In 1993 Canadian researcher Dr. Jim Gusella and his team discover the HD gene mutation at the University of Massachusetts. Direct testing becomes available providing those at-risk with a definitive answer as to whether they will develop Huntington disease.
- The first HD INDY Go Kart Challenge fundraising event occurs in Niagara Falls.
- In 1996 the first transgenic mouse for HD, the YAC mouse model, is created. This mouse replicates the HD symptoms and progression in humans. This mouse enables scientists to achieve more accurate results in effecting HD in experiments testing new possible treatments.
- The Huntington Society collaborates to open the first Multidisciplinary Clinics in Vancouver, Toronto, and Calgary.
- Chapters established in Pugwash/Cumberland, Saskatoon, Algoma, Nipissing, Bridgewater, Northern Vancouver Island, Prince Edward Island and Fort McMurray.
1984 – 1992
- Resource Centres open in Vancouver, Winnipeg,Edmonton and Montreal.
- Ralph Walker is elected President of the IHA, and a Predictive Test Committee is established to create international guidelines for when predictive testing is ready.
- HSC establishes the HD DNA bank to store blood samples from families members for future testing.
- HSC contributes to Dr. Michael Hayden’s efforts to establish an HD predictive testing centre in Vancouver, one of only three such projects in the world.
- Ralph Walker is elected Chairman of the IHA at its biennial meeting in France.
- HSC publishes the first comprehensive Manual for Care, with international distribution.
- National Amaryllis Campaign is launched.
- Chapters established in Fredericton, Sussex, Thunder Bay, Brandon, Sherbrooke, Bonne Bay, Bathurst, Medicine Hat and Lethbridge.
- The Huntington Society of Quebec is incorporated.
1978 – 1983
- On behalf of HSC, Ralph Walker initiates the Canadian Neurological Coalition (CNC).
- HSC awards its first post-doctoral fellowship to further investigate HD-specific neurotransmitters.
- Chapters are established in Kingston, Timmins, Victoria, Corner Brook, St. John’s, Truro, Kelowna, Sudbury, Dalhousie and Moncton.
- HSC launches a logo design featuring the flower of a vibrant growing plant. The symbol is adopted by the IHA has since become the international symbol for most HD organizations around the world.
- HSC’s first Huntington Disease Resource Centre opens in Toronto.
- With the support of the CNC, HSC establishes the Canadian Brain Tissue Bank, one of only four in the world.
- Canadian scientist, Dr. James Gusella, announces a marker linked to the HD gene, opening the door to future predictive testing for Huntington disease.
1976 – 1977
- Huntington Society of Canada becomes a registered charitable organization and adopts a logo. This logo symbolizes the head and upper torso of a person, the smaller, reversed image in the centre, illustrates the reduced abilities of a person affected by HD.
- HSC opens its National office and appoints Ralph Walker as Executive Director.
- Stan Edwards, President of the Society, represents Canada at the second International Huntington Association meeting in Holland.
- HSC awards its first research grants to help scientists in neurological research.
- Chapters established in Halifax, Northern Alberta, Regina, Abbotsford, Niagara and Sterling-Belleville.
1973 – 1975
- On October 1st, volunteers Ralph & Ariel Walker began a Canadian chapter of the American Committee to Combat Huntington’s Disease. Within days, the first public meeting in Canada on HD is organized, 150 people are in attendance.
- The Huntington Society of Canada (HSC) is formed.
- Chapters are established in Hamilton, Toronto, Winnipeg, Ottawa, Southern Alberta, Montreal, London and Windsor.
- Scientific Advisory Council is created to provide advice to the Society.
- Members from across Canada attend the first HD Educational workshop in Toronto.
- Ralph Walker meets with representatives from Britain and USA to form the International Huntington Association (IHA).
- HSC publishes Huntington’s Chorea. For the first time, Canadian families are provided with information about the disease in both French and English.