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In the Know – January 2019

VOLUME 14, ISSUE 1

 

RESEARCH NEWS

December 2018 Phase III GENERATION HD1 Study Update
HSC Website – December 19, 2018

On December 19, 2018, Roche Pharmaceuticals announced the expected locations of the clinical trial sites in Canada that will be participating in the Phase III GENERATION HD1 study. Click here to read the full update.

CCGF NEWS

CCGF Statement on the Quebec Court of Appeal Decision Regarding the Genetic Non-Discrimination Act
CCGF – January 16, 2019

The Canadian Coalition for Genetic Fairness (CCGF) was disappointed with the Quebec Court of Appeal view that the Genetic Non-Discrimination Act (GNA) does not constitute a valid exercise of Parliament’s criminal law power. Click here to read the full update.

QCCA Rejects As Unconstitutional Legislation Criminalizing Breaches of Genetic Privacy
The Court.ca – January 21, 2019

The Quebec Court of Appeal (QCCA) recently delivered its opinion in the Genetic Non-Discrimination Act Reference, concluding that the Genetic Non-Discrimination Act is beyond the scope of the federal criminal law power. Click here to read the full article.

La discrimination génétique peut aller de l’avant
Le Devoir – January 21, 2019

La profession médicale s’est dite en faveur de cette loi parce qu’elle s’inquiète que de plus en plus de patients refusent de passer des tests génétiques qui pourraient améliorer leurs traitements par crainte d’être ensuite inadmissibles à de l’assurance. Lisez l’article intégral ici.

COMMUNITY NEWS

Saskatoon’s Up All Night Improv Event a Big Hit
CTV Saskatoon – January 10, 2019

Twenty-four hours of improv hosted in Saskatoon by multiple improv groups. Click here to watch the full interview.

Origins of the Huntington Society of Canada
Zeal Access – January 7, 2019

At the Huntington Society of Canada’s National Conference in Kelowna, we talked with one of the organizations co-founders, Ariel Walker, about the origins of this large and influential patient group. As Walker notes in this video, its origins were quite modest – just 2 people sitting around a kitchen table. Click here to watch the full interview.

Conference Creates Events!

In November 2018, families and individuals from across Canada came together in Kelowna, BC for the bi-annual two-day Conference. Conference left attendees feeling so refreshed and engaged that several fundraising and awareness events have been planned since! Click here to read the full impact Conference had.

Talk About Grief (Before it Arrives)
Zeal Access – December 17, 2018

At the Huntington Society of Canada’s National Conference in Kelowna, we talked with one of the conference’s keynote speakers – Yvonne Heath – about the grieving process. As she explains in this clip, one of the best things you can do to combat grief is to talk about grief before it happens. Click here to watch the full interview.

2019 is off to to an ‘eventful’ start!

It looks like the year ahead will be yet again filled with engaging community events across Canada, raising funds and awareness for HD. Sports raffles, themed runs, concerts and more! Click here to see a full list of events near you.

HSC NEWS

FAMILY SERVICES STAFF ANNOUNCEMENTS: HSC HIRES NEW RESOURCE CENTRE DIRECTOR

HSC is happy to announce the appointment of Shelley Thiele as the new Resource Centre Director for Southern Alberta. Click here to read the full announcement.

AMARYLLIS

Our 2018 Amaryllis Photo Festival is in full swing and you only have until January 31 to submit your photos! Send them to amaryllis@huntingtonsociety.ca or share them on social media with #HSCAmaryllis. Click here for more information about the contest.

Champion of Hope

Did you know that a donation of $30/month enhances direct support services, including counseling, referrals and recreational programs for one person with HD for a year? Click here to learn more about our Champion of Hope monthly giving program.

       

 


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