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In the Know – July 2016

Volume 11, Issue 7



Genetic Fairness

Canadian move to bar genetic discrimination wins American advocacy award
Metro News – June 27, 2016

Senator James Cowan has been cited along with Bev Heim-Myers and the Canadian Coalition for Genetic Fairness for their roles in pushing a law [Bill S201] that would prevent genetic discrimination in Canada. Read the full article here.

ASHG honours James F. Gusella with William Allan Award
EurekAlert! – June 28, 2016

The American Society of Human Genetics (ASHG) has named James Gusella, PhD, Bullard Professor of Neurogenetics in the Department of Genetics at Harvard Medical School, Research Staff in the Department of Neurology at the Massachusetts General Hospital (MGH), and an Associate Member at the Broad Institute, the 2016 recipient of the annual William Allan Award. Read the full release here.

Huntington Society of Canada

Our Heroes: The Exeter Hike
HSC Events Blog – July 4, 2016

Still reeling from the huge success of the 10th annual Hike for Huntington Disease in Exeter last month, this blog post from the HSC events team talks about what went into planning this event and thanks all involved in contributing to the success. Read the post here.

Our Fabulous Duo

NG News Nova Scotia July 11, 2016

The duo is crossing Canada on bicycles to raise awareness for Huntington disease, expecting to reach Nova Scotia – including a stop in Pictou – this week. Click here to read more.

Men cycle cross-country for Huntington disease

Huntsville Forester June 29, 2016

As hundreds of athletes took to Huntsville on the morning of June 26th, two cyclists continued on their own “marathon.” Martin Denonville and James Stewart arrived in Huntsville on Thursday, June 23 and together, they make up Two Four One, a duo cycling cross-Canada for Huntington disease. Read the full article here.

Cyclists hit Huntsville in journey across Canada

Windsor Star June 24, 2016

Two for One cyclists Marty Denonville and Jim Stewart have passed the halfway mark in their 7,500 km ride across Canada in the fight against Huntington’s disease. To read the full article, click here. To learn more about the ride, and to see if Marty & Jim will be stopping by in your area, click here.

Indy go-kart challenge is driven to find a cure for Huntington disease

The Journal Pioneer – June 26, 2016

An adrenaline pumping go-kart race blasted off at the Burlington Amusement Park on the morning of Saturday, June 26th, all in support of Huntington disease. Over the years, they’ve raised more than $55, 000! Read the full article here.

What does accessible Canada mean for you? The Government of Canada launches consultation on new legislation expected on accessibility

Cision NewsWire – June 22, 2016

On June 22nd, 2016,  the Minister of Sport and the Disabled, the Honourable Carla Qualtrough, announced the launch of a national consultation process to inform the development of a planned law which will transform the way the Government of Canada addresses accessibility issues. Read the full media release here.

2016 Amaryllis Campaign

Sales are blooming! The 2016 Amaryllis Campaign is growing hope all over and it’s all because of the wonderful people involved in supporting the Huntington Society of Canada. We want to congratulate our early bird winner, Brenda Carillo! She won a FitBit wrist band simply for getting her order in before July 1st! 2016 is a new year for amaryllis, with a beautiful new box design. Visit us on Facebook to see it. Visit to learn more and participate in this year’s campaign.

PSA Campaign

To learn more about our PSA campaign, What is Huntington Disease?, and to see where the radio and tv ads are airing in your region, click here.


Slightly long CAG repeats are more common than we thought
HDBuzz – July 5, 2016

Dr. Jeff Carroll takes a look at a new population study which reveals that relatively mild forms of the HD mutation are much more common than we thought. Read the full article here.

Early exposure to the HD protein may cause life-long symptoms
HDBuzz – June 28, 2016

Dr. Shawn Minnig takes a look at a surprising new mouse study that suggests the mutant HD gene may do some of its damage during embryonic development. Read the full article here.

Ask the scientists anything! Live from the HDSA Convention 2016
HDBuzzCast – Jun 28, 2016

Jeff and Ed present a live recording of their ‘ask the scientists anything’ session from the 2016 HDSA Convention. Hear the full podcast here.

Canadian Dementia Priority Setting Partnership
Survey open until August 1st, 2016.

The Canadian Dementia Priority Setting Partnership is asking Canadians about their priorities for dementia research.  The goal is to gain more insight from individuals affected and their caregivers from across the country. The survey is open to all Canadians and is available in English here and French 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.
Click here to read HD Insights, Volume 14 of their HD research periodical.

Video Postcard from the 2016 HD Therapeutics Conference
CHDI Foundation

Click here to watch the postcard from Palm Springs.

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