Living with Knowledge: Testing for an Incurable Disease

    KITCHENER, ON, Oct. 13 /CNW/ - If you lived every day with the knowledge
that there was a 50% chance that you had inherited an incurable and fatal
disease would you want to find out for certain if you had the disease?
    This is a question that individuals and families living with Huntington
disease (HD) struggle with every day. Across Canada approximately
18,000 people are at risk of inheriting this devastating disease, which
progressively destroys both mind and body, eventually taking away the ability
to speak, walk and even eat without help.
    "Strength and resilience are only some the words to describe individuals
with Huntington disease and their families," says Don Lamont, CEO and
Executive Director of the Huntington Society of Canada. "At risk individuals
not only live with the knowledge of the disease and the difficult decision of
genetic testing, but they also must deal with the daily realities of seeing
their parent cope with the relentless, progressive losses," continues Lamont.
"The Globe and Mail feature of Saturday, October 13, gives a good profile of
the disease, the search for a treatment, the people affected and how they live
with the knowledge of HD."
    The Huntington Society of Canada (HSC) acknowledges the genetic testing
decision is a personal one and one that is not to be taken lightly. HSC works
in a multidisciplinary setting with genetic testing clinics across the country
providing guidance through the decision-making and testing process; this
continues after the results are known. The Huntington Society of Canada
provides immediate support for families living with the devastating effects of
Huntington disease through our Individual and Family Services program. Our
professional staff are Huntington disease specialists who help families and
professionals respond to the challenge of HD.
    The Huntington Society of Canada also works to foster cutting edge
research across Canada bringing us closer to a treatment. The recent
breakthrough at the Centre for Molecular Medicine and Therapeutics (CMMT) in
Vancouver, BC of stopping the progression of HD in mice is an example of the
hope being provided to the Huntington disease community.
    This discovery reinforces the success of Huntington researchers in
Canada, who are showing the way in the international drive to find treatments
for the disease.
    The discovery is the result of a world-class, collaborative research
process that serves as a model for other diseases. This process will continue
to yield promising discoveries and also provide hope to future generations
suffering from other related neurodegenerative disorders like Parkinson's and
Alzheimer's. The latest research from CMMT is profiled in the Globe and Mail
feature from Saturday, October 13.
    "Our families live on a 'tightrope' waiting for an effective treatment
for HD," says Lamont. "The latest research discoveries provides hope for the
Huntington community - most of all, hope that their children will not have to
suffer the devastation of this inherited disease."
    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. HD 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.

    The Huntington Society of Canada ( is a national
network of volunteers and professionals working together to optimize the
quality of life of individuals with Huntington disease and their families, and
ultimately to create a world free of Huntington disease.

For further information:

For further information: Katie Reid, Communications Officer, Huntington
Society of Canada, 151 Frederick St., Suite 400, Kitchener, ON, N2H 2M2, (519)
749-7063 ext. 27,; Don Lamont, CEO and Executive
Director, Huntington Society of Canada, (519) 749-7063 ext. 24,

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