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The Huntington Society of Canada is a not-for-profit charitable organization which raises funds to deliver individual and group counselling service to support individuals and families living with Huntington disease (HD) and to fund medical research to delay or stop the progression of the disease. The Society also works with health and social services professionals to enable them to better serve people living with HD.

How genetic testing can be used against you – and how Bill S-201 could change that

April 3, 2016

When Brittnee Sheridan turned 18, she was legally allowed to undergo genetic testing for BRCA1, a gene that increases risk of breast and ovarian cancers. She did, immediately – even though her grandmother was against it. “We got into an argument because she didn’t want me to get a test,” says Sheridan, who lives in Sudbury. “She said I was ruining my life, potentially.”

Her grandmother had good reason to urge caution – her insurance company had cut her off after she tested positive for the gene. With the help of a lawyer, she eventually re-qualified for coverage, but at a limited amount. Worse, though, was the sting of being singled out for her genetic background. It stuck with her, and with other members of the Sheridan family, who have a 50-per-cent chance of carrying the gene. Neither Sheridan’s mother nor aunt has applied for insurance as a result. Her 15-year-old brother says he won’t be tested.

Canada is the only country in the G7 that does not have a law in place to protect people from discrimination based on their genetics. Considering that there are more than 33,485 genetic tests available, and counting, the lack of protection affects everyone. Medical science is unlocking a database of life-saving information, but Canadians face a major barrier to obtaining that information.

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Newfoundland man raises awareness for Huntington disease to help his wife

Rich Wheeler’s wife, Ruby, has Huntington disease (HD). Rich has chosen to help raise awareness for HD this May during Huntington Disease Awareness Month by sharing his family’s story.

Every hour on the hour throughout his work day, Royal Newfoundland Constabulary Sergeant Rich Wheeler calls home to make sure his wife is OK. Ruby has Huntington disease (HD), a fatal hereditary disease that is slowly destroying parts of her brain. Right now the 50-year-old can still manage on her own, but she is a little unsteady on her feet and has cut herself a few times chopping vegetables. So Rich worries. He calls. And whenever he can, he pops home at lunch to see how she is doing.

The couple knew this day might come. Because Ruby’s dad had the disease, she and her siblings each faced a 50:50 chance of inheriting the fatal gene. As it turned out, Ruby lost that coin toss. These days, she has been forced to quit working. She and Rich wonder whether their 24-year-old son has inherited the gene. And they know that if he has children, Ruby probably will not be around to see them grow up. “We live one day at a time,” Rich says.

They focus their energies on raising money to fund services for people with HD and to support research. “It is our hope that a cure is right around the corner,” says Rich. “It may be too late for Ruby, but it may help others who are at-risk.”

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