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In The Know – April 2016

Volume 11, Issue 4

 

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NEWS

Genetic Fairness

Genetic testing bill to get final reading in Senate this week
CBC News – April 12, 2016

Brynne Stainsby’s father tested positive and now she’s been blacklisted by most insurers for refusing to be tested. Bill S201 would bar insurance companies and employers from requesting genetic testing or asking for results. Read about her experience and what Senator Cowan has to say, here.

Laws to protect Canadians from genetic discrimination could soon come into effect
CTV News Channel – April 5, 2016

CEO Bev Heim-Myers speaks to CTV News about Bill S-201, also known as the Genetic Non-Discrimination Act, and it’s status in Senate. See the video interview here.

How genetic testing can be used against you – and how Bill S201 could change that
The Globe and Mail – April 3, 2016

CEO Bev Heim-Myers, Senator James Cowan and Brynne Stainsby, a frequent HSC collaborator, speak to The Globe and Mail about the impact of being the only G7 country without genetic non-discrimination legislation. Read the full story here.

Huntington Society of Canada

REMOVING THE MASK: PREMIERE
April 23, 2016

The Canadian premiere of the Huntington Disease Project documentary by WeHaveAFace.orgRemoving the Mask, is set to premiere on April 23, 2016 at the University of Guelph. For more information, and to reserve a spot at the screening, click here.

Celebrating extraordinary people: National Volunteer Week
April 10-16, 2016

We’re celebrating National Volunteer Week  with Volunteer Canada. Here at HSC, we’re celebrating by highlighting some of our volunteers, from Chapter members to members of the Board. To see how some of our volunteers have made a positive impact in the HD community, click here.

Indie band partners with Huntington Society of Canada to help spread the word on the disease
A Journal of Musical Things – April 12, 2016

The blog, A Journal of Musical Things, discusses the ongoing Let’s Boogie Tour, in partnership with Eli and the Strawman. To read the full post, click here. To see when they’re playing near you, click here.

Niagara band tours to support Huntington disease research
Niagara Falls Review – April 8, 2016

Niagara band Eli & the Straw Man is hitting the road this month for the Huntington Society of Canada and to raise awareness for Huntington disease across the nation. See the full article here.

Soundcheck: Ont. band tours for Huntington disease awareness
Saskatoon StarPhoenix – April 7, 2016

Ontario band Eli & the Straw Man is a six-piece hitting the tour circuit this month. See the full article here.

Just living life: A focus on what matters most in coping with the risk of Huntington disease
CureHD – April 4, 2016

As a carrier of the Huntington disease gene who’s reached the age of 56 without apparent HD symptoms, Gene Veritas believes that the emotional release associated with his blog, At Risk for Huntington’s Disease, has helped him stave off the inevitable onset of the disorder. Read about his experience here.

Sudbury HSC Chapter Billiards Night – A Great Success!
April 2, 2016

On April 2nd the Sudbury HSC chapter hosted a billiards night in support of Huntington disease. They had a record year with 119 participants and raised over $4000.00. Congratulations to the Sudbury chapter, we’d like to give a special shout out to Patricia Delyea and Rita Deschene for all their efforts! To see more HSC events in your area, click here.

North American HD Youth Camp applications – due in April!
HDYO

After the great success of the North American camp last year, we are very happy to announce the opening of applications for the camp again this year! For more details and the application form, please click here.

RESEARCH NEWS

How NOT to write a news article about a clinical trial
HDBuzz – March 11, 2016

An article in the UK newspaper, the Daily Telegraph, had HD families very excited. The title, “First drug to reverse Huntington’s disease begins human trials,” certainly sounds exciting! But what’s really going on? HDBuzz is here to help us untangle hope from hype in the huntingtin lowering world. Read the full article here.

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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.

Call for Board Members
Huntington Society of Canada

Are you a supporter of the Huntington Society of Canada? Interested in getting more involved? HSC is now accepting nominations to its Board of Directors for vacancies beginning in 2016 and 2017. The national board includes 15 directors from across the country who combine enthusiasm for the Society’s work with expertise in one or more areas of business including law, fundraising, communications, strategic planning, media and human resources. Forward your CV and letter of interest outlining your skills and experience to:

Huntington Society of Canada
151 Frederick St, Suite 400
Kitchener, ON N2H 2M2
ATTN: HSC Board

All nominations received by April 30, 2016 will be considered.

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