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In the Know – March 2016

Volume 11, Issue 3



Genetic Fairness

Who should have the right to know your DNA?
Ontario Today, CBC – February 19, 2016

A genetic test can alert you to a ticking time bomb. But it can also cost you big time. Even if you never get sick, that test can affect your insurance and your job. An insurance industry lawyer, a geneticist and callers, including CEO Bev Heim-Myers, debate whether those results should be shared. Listen and download the full radio podcast here.

Are people discriminating based on genetics?
MainStreet, News Talk 980 CJME – February 23, 2016

Hear CEO Bev Heim-Myers, also Chair of the Canadian Coalition for Genetic Fairness (CCGF), discuss the importance of genetic non-discrimination legislation in Canada with MainStreet podcast hosts Jill Slater and Dave Arnold. Listen and download the full radio podcast here.


The face of a campaign
Brockville Recorder – February 19, 2016

Brockville’s Erin Wade has been at the forefront of raising local awareness about the debilitating effects of Huntington disease. Now, the 23-year-old daughter of Cindy Moore with the endearing smile is set to be the face of a national research campaign set to launch next month. Read the full story and see what Erin and Cindy have been up to, here.

All I’m asking is for a fair chance – February 19, 2016

At-risk for Huntington disease, Kaitlyn Neuman asks the tough questions in this opinion piece originally published for our website. See the article here and read the full persuasive essay here.

2Guys4Wheels1Cause host spinathon for Huntington disease
The Lance, University of Windsor – February 25, 2016

Marty Denonville, 63, and Jim Stewart, 62, have been planning to bike cross-Canada and on the way they have been coming across supporters to host events with them. They hosted a spinathon event in late February to raise money for members of the local community with Huntington disease. Read about the event here.

Riders help raise $28k for Huntington disease research
The Selkirk Record – March 3, 2016

A team of snowmobile enthusiasts helped raise $28,000 for Huntington disease care and research during an HD500 event hosted in Manitoba, a two-day trip from Lockport to Bird Lake and back, during the February 26-27 weekend. See Page 11 of the online issue to read about the event.

Removing the Mask: Premiere
April 23, 2016

The Canadian premiere of the Huntington Disease Project documentary by, Removing 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.

North American HD Youth Camp applications now open!

For more details and the application form, please click here.


First patients safe in Ionis trial for Huntington disease treatment
Gene Veritas – February 24, 2016

An update from Sarah Tabrizi, M.D., Ph.D., on the Ionis Pharmaceuticals, Inc. gene-silencing clinical trial for a Huntington disease treatment at the 11th Annual HD Therapeutics Conference, sponsored by CHDI Foundation, Inc. in Palm Springs, CA. See the full (video) update here.

‘Every confidence first Huntington disease treatments’ in the works
Gene Veritas – February 24, 2016

Robert Pacifici, Ph.D. and chief scientific officer for CHDI, granted an interview about the latest Huntington disease research to Gene Veritas at the 11th Annual HD Therapeutics Conference, sponsored by CHDI Foundation, Inc. in Palm Springs, CA. See the full interview here.

Could a new “jaw-dropping” breakthrough help treat Huntington disease?
HDBuzz – February 25, 2016

Recent days have seen a torrent of news stories about a new technology, called CRISPR, which has been described as having potential application in Huntington disease. Is this new technique as cool as it sounds? Possibly — but, as always, the truth is more complicated than the headlines suggest. To read more, click here.

Monthly Bulletin for March
Enroll-HD – March 2016

Check out the latest updates from Enroll-HD here.

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

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

HSC Staff Changes

The Huntington Society of Canada is pleased to welcome Adriana Van Oostveen who will be joining us as National Events & Chapter Development Coordinator. Adriana comes to us with approximately 4 years’ experience in the non-profit sector, having served most recently as Coordinator, Programming & Events with 4-H Ontario. Adriana has expertise in creating and planning events, community engagement and working with volunteers. She can be reached at Adriana will be the person to direct Chapters and volunteers to, with regards to questions about event management, and is located at the Kitchener office.


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