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In The Know – May 2016

Volume 11, Issue 5

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NEWS

Genetic Fairness

Canada’s insurance companies want all your genetic information
Motherboard, VICE – May 13, 2016

“If information is power, then DNA is the ultimate weapon.” Staff writer Jordan Pearson breaks down how and why the insurance industry isn’t going to stop its fight to get its hands on your genetic information.  Read the full article here.

Legislation needs to catch up to genetic science
Waterloo Region Record – May 5, 2016

CEO Bev Heim-Myers speaks to the Waterloo Region Record, asserts Canadians of importance of non-discrimination legislation by saying “The average person is not aware that their genetic information can be used against them.” Read the full article here.

Genetic discrimination bill would protect patients from insurance companies: Oliphant
The Globe and Mail – May 4, 2016

Last week in parliament Liberal MP Rob Oliphant said Canada needs to pass legislation to protect patients who fear genetic discrimination, as a bill addressing the issue made its way to the Commons after receiving unanimous support in the Senate. See the full article here.

Bill to fight genetic discrimination among life insurers
CITY News – May 3, 2016

A bill is looking to protect Canadian consumers’ sensitive health data to deter genetic discrimination among life insurance providers. MP Rob Oliphant, CEO Bev Heim-Myers and Brynne Stainsby, a frequent HSC collaborator, speak to CITY News.  Watch the video story here.

Bill would forbid insurers and employers from delving into citizens’ genetic code
National Post – May 2, 2016

Thirteen years after the human genome was mapped, members of Parliament will start to consider whether genetic discrimination should be outlawed. Read the full article here.

Huntington Society of Canada

‘When Huntington disease is in your family, it’s like it never leaves you’
Saskatoon StarPhoenix – May 16, 2016

HSC Board member Brenda Wasylow speaks to the Saskatoon StarPhoenix about her personal experience with Huntington disease (HD).  To read the full story, click here.

Basketball tournament with heart
The Peterborough Examiner – May 15, 2016

The Peterborough Examiner recaps this past Saturday’s Score One for the Team event in support of Huntington disease research. Since 2009, the charity event has raised over $38, 500! To see the full article, click here.

May is Huntington Disease Awareness Month
Times Colonist – May 14, 2016

Timescolonist.com spreads awareness for Huntington disease (HD) by sharing information about HD on their website. To see the spot, click here [scroll to middle of page].

Windsor men cycle across Canada
AM800 Afternoon News – May 10, 2016

Marty Denonville, from 2 Guys, 4 Wheels, 1 Cause (the two courageous guys cycling across Canada in support of Huntington disease), joins the afternoon news segment on AM800 to discuss the ride and what it entails. To hear the radio interview, click here. To learn more about their cross-country journey, click here.

Huntington Society of Canada presents ‘Score one for the team’
Fleming College – May 9, 2016

The Score One for the TEAM committee is pleased to announce the eighth annual ‘score ONE for the TEAM’ 3 on 3 Basketball Tournament, sponsored by Nortrax and ServiceMASTER! To read the full article, and more about the event, click here.

Mayor declares May Huntington Disease Awareness Month
Sudbury.com – May 6, 2016

Sudbury Mayor Brian Bigger declared May Huntington Disease Awareness Month during a small ceremony at Tom Davies Square on May 5, 2016. To read more about the event, click here.

Walking for awareness: Huntington disease
The Carlyle Observer – May 6, 2016

For the past five years, a group in Wawota have walked to raise money for the Huntington Society of Canada. Again they came together to walk for Huntington Disease to raise awareness and donations towards research for HSC. See the full article here.

Eli & the Strawman are set to play Toronto’s Canadian Music Week Festival
The Examiner – April 22, 2016

Niagara band Eli & the Straw Man is a six-piece playing the annual Canadian Music Week Festival. See the full article here.

Rack ’em up! Photos from the Huntington Society’s annual billiards event
April 15, 2016

On April 2nd the Sudbury HSC chapter hosted a billiards night in support of Huntington disease. They headed over to Rhythm’n’Cues in Sudbury for their 4th annual billiards tournament. To see the article and the accompanying pictures, click here.

Huntington Disease Awareness Month

Huntington Disease Awareness Month is well underway and that means you’ve probably been seeing a lot of buzz around our Light It Up 4 HD and PSA campaigns. To see more about the sites and monuments lighting up this month, click here. To learn more about our PSA campaign, What is Huntington Disease?, click here.

RESEARCH NEWS

Thinking clearly about the earliest symptoms of HD and which brain regions control them
HDBuzz – April 18, 2016

HDBuzz takes a look at the far reaches of HD within brain structures; reaching more brain structures than we thought: new research broadens their understanding of the earliest signs of HD.  Read the full article here.

Monthly bulletin for April
Enroll-HD – April 2016

Check out the latest updates from Enroll-HD here.

Huntington Study Group

For more information about high-quality clinical research trials and studies in Huntington disease (HD), the Huntington Study Group offers the first and largest HD clinical research network of over 400 active and compassionate investigators, coordinators, scientists and HD experts at over 100 HSG Credentialed Research Sites across the globe dedicated to seeking treatments that make a difference and improving the quality of life and outcomes for families affected by HD. Click here to visit their page.

Video Postcard from the 2016 HD Therapeutics Conference
CHDI Foundation

Click here to watch the postcard from Palm Springs.

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Survey – Horizon Newsletter
Open until May 31, 2016

Have your say! Would you like to see something in Horizon that we haven’t covered? Now is your chance to let us know – your opinion matters. Click here to go to the survey.

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