Volume 12, Issue 1
GENETIC FAIRNESS
Laws needed to prevent genetic discrimination
Postmedia Network – January 13, 2017
Many Canadians are apprehensive about the miraculous diagnostic tool known as genetic testing. Their fears are well-founded — ours is the only G7 country with no law to protect genetic test results. Read the full article here.
Life insurers’ new genetic test policy called an 11th-hour stalling attempt
CTV News – January 11, 2017
The decision by Canada’s life insurers to stop requiring genetic testing for the vast majority of new policy holders is being dismissed as a pre-emptive strike against pending federal legislation that the industry strongly opposes. Read the full article here. Learn more about genetic discrimination, and how you can get involved, here.
Canadian insurance industry pens rules on use of genetic test results
The Globe and Mail – January 11, 2017
Carly Weeks takes a look at the new measures Canada’s life insurance industry is set to introduce. Although it says it will protect consumers from genetic discrimination, the changes won’t stop Canadians from being unfairly targeted because of their genetic risk profile. Read the full article here. Learn more about genetic discrimination, and how you can get involved, here.
HSC NEWS
Home for the Holidays in Pincher Creek
HSC Events Blog – January 5, 2017
The Chapter Development team recounts the national Holiday Hustle events that took place this past December, and particularly, long-time volunteer and friend of HSC, Bev Everts event in Pincher Creek. Take a look at the blog post here.
Volunteers across Canada raise over $5 million for Huntington disease
Asian Connections – December 22, 2016
The amaryllis bulbs are sold out! Hundreds of volunteers from coast-to-coast raised over $115,000 for Canadians impacted by Huntington disease (HD). To date, the campaign has raised over $5 million! Read the full piece here.
Huntington Society amaryllis kits back on sale – SOLD OUT
Milestone News – December 21, 2016
Milstone News takes a look at the McLeod family’s commitment to HD – through their long-running amaryllis sales. Read the full article here.
2016 HSC National Conference Summaries
Please click here to access the recorded sessions from our YouTube channel. Please click here if you would like to read the summaries in the latest issue of Horizon.
New Resources for Caregivers
New resources for caregivers are available on the website of the Federal and Provincial Ministers Responsible for Seniors Forum, which is an intergovernmental body established to share information, discuss new and emerging issues related to seniors, and work collaboratively on key projects. Click here to be directed to the Forum.
Amaryllis Photo Festival
It’s time for our annual Amaryllis Photo Festival! Photos of your blooming amaryllis (on its own or accompanied with your smiling faces or furry friends) can be posted to social media with the hashtag #HSCAmaryllis or sent to amaryllis@huntingtonsociety.ca. The winner will get to have their photographic masterpiece star on the HSC website as part of our 2017 Amaryllis Campaign. All individuals who submit photos by January 31, 2017 will also be eligible to win a Tim Hortons Gift Card as well as a copy of Julie Lawson Timmer’s sensational book Five Days Left. To vote on the entries so far, please click here.
Believe Campaign Video and YPAHD Video
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.
Understanding Behaviour 3rd Edition Now Available
Click Here to access an online copy of this comprehensive guide.
Help raise awareness and funds!
HealthPartners
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 info@huntingtonsociety.ca 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.
Family Services Staff Announcements
It seems fitting that with the ushering in of a new year, we also have some exciting new changes on the Family Services team.
Marthe Gautreau has been a long-time Family Services Worker in New Brunswick. With an increase in need for services in New Brunswick and some funding coming to the HSC for a Resource Centre, Marthe has accepted the position of Resource Centre Director for the newly-established New Brunswick Resource Centre. Marthe will work 25 hours per week and can be contacted via email mgautreau@huntingtonsociety.ca.
Antoine Coulombe joined HSC in November as the full-time Social Worker at the British Columbia Resource Centre. With Susan Tolley’s departure, Antoine has accepted the role of Resource Centre Director. Antoine can be contacted at acoulombe@huntingtonsociety.ca or 604-822-7195.
The Southern Alberta Resource Centre is also starting fresh in 2017 with a move to a more accessible space in Calgary beginning February 1. Shannon MacKinnon, our Resource Centre Director, can still be reached at smackinnon@huntingtonsociety.ca.
Please visit this page for the full contact information of our Family Services team.
RESEARCH NEWS
Treasure your exceptions – using outliers to understand Huntington disease onset and progression
January 12, 2017 – HDBuzz
A new study provides the framework for finding factors that affect the onset and progression of HD. Read the entire article here.
A powerful message: does a toxic RNA message molecule cause harm in Huntington disease?
December 30, 2016 – HDBuzz
Researchers have long believed that the HD gene causes problems by telling cells to make a harmful protein. Intriguing new animal work from researchers in Spain suggests we might want to look at more than one suspect to completely fix the problems caused by the HD mutation. Read the full article here.
Pfizer Amaryllis trial ends in disappointment: no improvement in Huntington disease symptoms
December 16, 2016 – HDBuzz
this past month, Pfizer announced the ‘Amaryllis’ trial of a PDE-10 inhibitor drug failed to improve symptoms of HD. HDBuzz delved into the importance of the study, regardless of its end result. Click here to read the entire piece.
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 declined, did 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 recognize 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).
Enroll-HD – December 2016
Check out the latest updates in Enroll-HD’s monthly bulletin here.
