Ariel Walker, co-founder of the Huntington Society of Canada was awarded the Ontario Medal for Good Citizenship on November 16th at a Queen’s Park Ceremony by David Onley, the Lieutenant Governor of Ontario.

The Ontario Medal for Good Citizenship is an official award of the Province and recognizes and encourages the virtues of good citizenship. Recipients must have made outstanding public contributions through exceptional long-term efforts. The award reflects their acts of selflessness, generosity and kindness, and exceptional contributions to community life. The award consists of a silver medal emblazoned with the provincial coat of arms on one side and the trillium on the other.

Ariel and her late husband Ralph started the Huntington Society of Canada from their home in Cambridge, Ontario in 1973.  Their unselfish efforts, vision, and persistence have enabled the organization to grow to serving families across the province.

Click here to read the full media release

A group in Alberta, called the Huntington’s Research Foundation of Alberta, has been collecting funds for Huntington disease (HD). This group is NOT connected with the Huntington Society of Canada or any of its Alberta Chapters.

Please click below to read the official statement from HSC.

The first study of genetic discrimination in Canada shows that Canadians at risk of developing Huntington’s disease frequently experience unfair treatment based on genetic information.

The study from researchers at the University of British Columbia looked at Canadians at risk of developing Huntington's disease. The UBC study surveyed 233 people across Canada -167 people who had been tested for the Huntington mutation (83 had the mutation and 84 did not), and 66 people who were at risk for the disease but had chosen not to have the genetic test.

Huntington disease (HD), is a hereditary brain disorder with devastating effects on both mind and body. HD affects 1 in 10,000 Canadians but touches the life of one in every 1,000, and is a disease of families - every child of a person with HD has a 50% risk of inheriting this deadly disease. Huntington disease is fatal; as yet, there is no treatment or cure.

They found the respondents reported discrimination most often in insurance settings. A full 29.2 per cent said they had experienced discrimination because of their genetic risk from life insurance, long-term disability, or mortgage insurance companies or agents. The discrimination came in the form of insurance rejection, premium increases, or requests to take a predictive test.

They found the respondents reported discrimination most often in insurance settings. A full 29.2 per cent said they had experienced discrimination because of their genetic risk from life insurance, long-term disability, or mortgage insurance companies or agents. The discrimination came in the form of insurance rejection, premium increases, or requests to take a predictive test.

About 15.5 per cent said they had experienced discrimination among family, particularly when making choices about having children, and 12.4 per cent among social settings, particularly by friends or when establishing a relationship.

For more information about the study please read the full media release.

The hope for a treatment for Huntington disease was strengthened when John Hopkins researchers announced today that have figured out why a faulty protein accumulates in cells everywhere in the bodies of people with Huntington disease (HD), but only kills cells in the part of the brain that controls movement, causing negligible damage to tissues elsewhere. The answer, reported this week in Science, lies in one tiny protein called “Rhes” that’s found only in the part of the brain that controls movement. The findings, according to the Hopkins scientists, explain the unique pattern of brain damage in HD and its symptoms, as well as offer a strategy for new therapy. 

“This is the first real insight at the protein level that helps us understand why the mutant huntingtin protein is most toxic in only one part of the brain”, says Dr. Ray Truant, Chair of the Huntington Society of Canada Research Council and Associate Professor, Biochemistry and Biomedical Sciences at McMaster University.

Huntington disease (HD), a hereditary brain disorder with devastating effects on both mind and body. HD affects 1 in 10,000 Canadians but touches the life of one in every 1,000, and is a disease of families - every child of a person with HD has a 50% risk of inheriting this deadly disease. Huntington disease is fatal; as yet, there is no treatment or cure.

Curious about the huntingtin protein’s striatal-specific effect, the research team searched for proteins that interacted locally, specifically and exclusively with huntingtin in the corpus striatum, guessing that the molecular answer to the mystery most likely would be found there.

The protein Rhes caught their attention because they already were studying a related protein for other reasons. Rhes was known to be found almost exclusively in the corpus striatum.

Conducting tests using human and mouse cells, they found that Rhes interacted with both healthy and mutant versions of huntingtin protein, but bound much more strongly to mutant huntingtin, also known as mHtt.

“This work compliments recent studies in HD research from both the Hayden and Truant laboratories in Canada, and the Finkbeiner lab in the US, that suggest that the aggregates of mutant huntingtin protein may actually be a good thing, and that the mutant protein that is free of those clumps is the really dangerous protein in HD. Similar conclusions are being realized in the Alzheimer’s disease community”, notes Dr. Truant.

This new discovery provides great hope for the HD community around the world.

“Our families live on a ‘tightrope’ waiting for an effective treatment or a cure for HD. The discovery provides hope for the Huntington community – most of all, hope that their children will not have to suffer the devastation of this inherited disease”, says Don Lamont, Huntington Society of Canada CEO & Executive Director.

May 2009 is Huntington Disease Awareness Month

I know that I’m able to laugh now: I also know that the disease will take me through many more phases and grief. The most difficult aspect of this disease is that the losses and work never stop. – Lorna: Living with Huntington’s

Lorna Cameron is one of more than 3,000 Canadians facing the daily challenges of life with Huntington disease (HD). An additional 18,000 are at risk. But what makes Lorna unique is the way in which she reveals how the disease has impacted her life.

Last fall, the British Columbia woman offered a very personal glimpse into her world through a revealing exhibition photographed by her close friend and caregiver Shari McDonald. Last October, “Lorna: Living with Huntington’s” was shown at the Galleons Lap art gallery on Salt Spring Island, British Columbia, where Lorna and Shari both reside. The show drew more than 200 people on its opening night.

Dr. Michael Hayden, named Canada's "researcher of the year" for 2008 by the Canadian Institutes for Health Research, will be in Toronto on Jan. 18, speaking on “Personalized Medicine: Hype or Hope, Canadian Perspectives”, an issue currently at the forefront of the not only the medical community, but the minds of many Canadians.

Considered one of the world’s most renowned geneticists, Dr. Hayden is a charismatic speaker who is best known for his groundbreaking research into Huntington disease (HD).

This free public lecture is being co-sponsored by the Royal Canadian Institute for the Advancement of Science (www.royalcanadianinstitute.org) and the Gairdner Foundation (www.gairdner.org). The event will be held at the MacLeod Auditorium, Medical Sciences Building, University of Toronto, 1 King’s College Circle at 3 p.m. with doors opening at 2:15 p.m.  After his presentation the Huntington Society of Canada will be hosting a reception to celebrate Dr. Hayden’s accomplishments from 4:30-6pm at the Collaboration Centre “café” at the MaRs Centre, 101 College Street.

HD Group in BC NOT Affliated with HSC
Please see the statement below regarding the solicitations for funds for Huntington disease from a group in BC.

HSC and HDSA First Ever Research Collaboration
The Huntington Society of Canada (HSC) and the Huntington’s Disease Society of America (HDSA) have announced a first time collaborative effort in supporting and funding Huntington disease research in North America. HSC and HDSA, two of the largest Huntington disease (HD) lay organizations in the world, are jointly funding a new research fellowship.

On Friday, November 30, 2007 Judy Koczula, president of the HSC Niagara Chapter, and her two children, Paul and Vicki Paone, were featured in an article in Niagara This Week.

The article profiles the family, their life with HD and their work with the Chapter. It will help bring awareness and greater understanding about HD to the Niagara area and show the strength of HD families.

To read the article please click here

HD Feature Article in Globe & Mail
The Huntington Society of Canada is thrilled to announce that a feature article about Huntington disease (HD) appears in the Saturday (October 13) Globe and Mail (Focus- a special pull out section). The article profiles the disease, the search for a treatment, the people affected and how they live with the knowledge of HD.

Triathlete Taking Cure HD Message to World Championships
The bicycle helmet has a simple message, "Cure HD."  The helmet belongs to Toronto triathlete Tim Irwin, 35, who recently qualified for the 2007 Triathlon World Championships being staged in Hamburg, Germany on September 2nd.  He is taking his "Cure HD" message to the race.  Other stickers on the helmet spell it out:  "Cure Huntington Disease".

Canadian Research Stop Progression of HD in Mice
Today, researchers at the Child and Family Research Institute’s Centre for Molecular Medicine and Therapeutics (CMMT), British Columbia, Canada provided groundbreaking evidence of a cure for Huntington disease (HD) in a mouse, offering hope that the disease can be cured in humans.

HSC Media Release: Canadian Researchers Stop Progression of HD in Mice

This proposal is in response to the March 2007 Budget, in particular the Registered Disability Saving Plan

Registered Disability Savings Plan (RDSP)

In the March 1007 budget, the Finance Minster, Hon. Jim Flaherty, proposed the establishment of the Registered Disability Savings Plan (RDSP). In this plan individuals, parents and grandparents would be able to save for a person (i.e. child, children) with a disability. This plan will enable people to save tax-free until withdrawal (similar to an Registered Education Savings Plan). There are two criteria for this program: eligibility they must be eligible for the “Disability Tax Credit” andis be a Canadian resident or parent or legal representative of a person who is resident in Canada. This is an opportunity for parents, or grandparents, with profoundly disabled children, grandchildren to save for future costs of home care, health care, etc. 

An opportunity like the RDSP would enable individuals with progressive, genetically inherited diseases, such as Huntington disease,s to plan and prepare for their future.  The Huntington Society of Canada has worked with many families who struggle with the burden of the un-funded costs of supporting individuals with HD in the community,. C such as nutrition supplements, respite care, transportation, equipment needs, and a host of other related costs. 

The current eligibility for RDSP means individuals with HD would not be eligible until they met the criteria for the Disability Tax Credit, i.e.: disabled to a point where it is unlikely that they would be able to work.  Once an individual is no longer able to be gainfully employed, their un-funded health care costs increase, and there is a potential reliance on other forms of government assistance. At this point in their lives it is not likely that they will be able to save and garner the benefits of this program.

The Huntington Society of Canada proposes that the eligibility for the Registered Disability Savings Plan be amended, allowing for individuals with Huntington disease to save for their future. Amending eligibility for the RDSP to include those individuals with a diagnosis of HD or those who have undergone predictive testing and have been determined to be gene positive, will allow them to plan for their future during their most productive employment years, before the symptoms of HD make working no longer possible. 

Don Lamont, on behalf of the Huntington Society of Canada, has sent background information and a letter to the Minister of Finance outlining our position on this proposed change.  It will also be important for Chapters and individuals who are connected with the HD community to also let their voice be heard.  Here is a letter which you can print and send to the Hon. Jim Flaherty letting him know your position, and agreement with the proposal stated above.