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In the Know – November 2016

Volume 11, Issue 11



Should insurers have access to your genetic test results?
The Walrus – November 1, 2016

Despite a new bill, Canada still lags in effective protection against genetic discrimination. Writer Fatima Syed takes a look at the importance of non-discrimination legislation in this long-form, informative blog post. Read it in full here.

Jewish group endorses MPP’s call to ban genetic discrimination
The Canadian Jewish News – October 28, 2016

As genetic testing becomes more prevalent, employers and insurance companies are denying coverage to people with inherited predispositions to various illnesses. Lead by Lorne Marin, the Centre for Israel and Jewish Affairs’ (CIJA) joined HSC CEO Bev Heim-Myers and others at Queen’s Park on October 27th to support Bill 30. Read the full article here.

American Society of Human Genetics Honours Senator James Cowan and Bev Heim-Myers with 2016 Advocacy Award
October 12, 2016

The American Society of Human Genetics (ASHG) has named the Canadian Coalition for Genetic Fairness (CCGF) and Senator James Cowan, LLM, QC, as the 2016 recipients of its annual Advocacy Award.Senator Cowan and Bev Heim-Myers, Chair of the Canadian Coalition for Genetic Fairness and CEO of the Huntington Society of Canada will be honoured by the ASHG on Friday October 21, 2016. See the press release here.


Final Thoughts on 2016 HSC National Conference
November 14, 2016

Annie Vanexem, Manager of National Chapter Development, recaps the 2016 National Conference and Awards Ceremony in this blog post. Click here to see her thoughts.

Baie Verte native Rich Wheeler recognized for raising Huntington disease awareness
The Norwester – November 10, 2016

The Norwester covers Rich Wheeler’s award, presented to him at this year’s National Conference in Halifax, and awareness efforts. We’re very proud of all that Rich has done! Read the full feature here. 

Believe Campaign Video and YPAHD Video
November 5, 2016

Click here to see a video combining #IBelieve statements from all across the HD Community.
Click here to see a recap of the 2016 YPAHD Day video made during this year’s national conference.

My smartphone helped me know my mother
The Globe and Mail – October 31, 2016

Christine Croucher had a troubled relationship with her mom. In the last few months of her mother’s life, technology deepened their relationship. Read the entire Globe and Mail special by clicking here. 

Amaryllis kits support Huntington efforts
Lethbridge Herald – October 26, 2016

Dave Sulz of The Lethbridge Herald discusses the amaryllis campaign and how it helps the Huntington Society of Canada fulfill its mission in helping grow a brighter future for those with Huntington disease. Read the full piece here.

Celebrate National Amaryllis Month with us!
It’s the last call for amaryllis.

The 2016 Amaryllis campaign is nearing the finish line and thanks to our amazing amaryllis sellers, amaryllis sales are not showing any signs of slowing down. We have almost reached our goal with less than 10% of our 2016 stock remaining. If you need to place your order, or if you need more amaryllis, please don’t wait. You can order by clicking here, emailing us at or by calling 1-800-998-7398. Thank you for your tremendous and continuous support and all you are doing to inspire hope!

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.

Understanding Behaviour 3rd Edition Now Available

Click Here to access an online copy of this comprehensive guide.

Help raise awareness and funds!

The Huntington Society of Canada is looking for volunteers to engage donors at various workplaces across Canada through our partnership with HealthPartners.  If you enjoy public speaking, and are looking for a way to increase HD awareness in your community please contact us at for more information on this unique volunteer opportunity. To learn more about HealthPartners, click here.

Educational Huntington Disease Videos Available in English, French and Innu
UAUITSHITUN Santé et Services sociaux

This website provides details on a variety of topics in relation to Huntington disease, ideal for anyone looking for more information. The videos are available in 3 languages. Click here to check them out.


Critical Path Institute and CHDI Foundation, Inc., establish a consortium to expedite approval of Huntington’s disease therapeutics – November 3, 2016

Critical Path Institute (C-Path) and CHDI Foundation, Inc., are collaborating to set up a broad-based consortium that will more clearly define regulatory pathways leading to the approval of Huntington disease (HD) therapeutics. Read about it here.

Important advances in next generation genome editing tools for Huntington disease
HDBuzz – October 31, 2016

Recent days have seen a slew of news emerging regarding the use of something called genome editing as a potential therapy for genetic diseases like HD. These approaches, which include exotic sounding tools like zinc finger nucleases and CRISPR/Cas9, differ from more traditional ways reducing the impact of the HD mutation on cells. What’s new in this exciting area of research? Read the full article here.

Ionis Phase 1 Huntington disease trial at halfway mark: ‘No surprises so far’ means good news – October 20, 2016

At its halfway mark, Ionis Pharmaceuticals’ historic Huntington disease Phase 1 gene-silencing clinical trial is on track to finish as scheduled in late 2017, company officials have stated. Read more about the update here. 

CHDI Foundation Award to Advance Research in Huntington Disease
Huntington’s Disease News – October 18, 2016

The CHDI Foundation, a privately-funded nonprofit research organization dedicated to fighting Huntington disease and a frequent collaborator of HSC, has awarded a research grant to a team of scientists from the University of Rochester Medical Center (URMC) to study the role of specific cells in the development of the disease. To read the full article, click 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.

N2 Clinical Research Participation Experience Survey (Available in English & French)
Open until March 31, 2017

N2 is assisting with recruitment for the Canadian Clinical Research Participation Survey funded by the CCTCC (Canadian Clinical Trials Coordinating Centre).  Clinical researchers in Canada would like to hear from patients and study volunteers about their experience with clinical trials.  Any Canadian who has ever been approached to participate in a clinical trial and either declineddid not qualify or participated is invited to respond. Click here to fill it out now.

Psychological health of people affected by Huntington disease survey
Open until February 2017

Aimed at those who have tested positive for HD but have no formal diagnosis for the disease, this survey aims to discover how gene-positive individuals regulate their own emotions and recognise them in others. The survey aims to get a better understanding of how HD impacts the psychological well being of affected people (which is still quite an unexplored field, unfortunately). The study has been fully approved by the Research Ethics Committee of the Faculty of Health and Medicine of Lancaster University (this is an overseas project and not from HSC). Click here to complete the survey.

HSC Staff Announcements – Shirley Barnes, Susan Tolley

Soon, the Huntington Society of Canada will bid farewell wishes to two long term, incredibly dedicated staff.  Susan Tolley, HD Resource Centre Director in BC and Shirley Barnes, Office Administrator in Kitchener, have chosen to retire and enjoy some well-deserved “me” time. To read more about their journey with HSC, click here.

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