Volume 12, Issue 2
GENETIC FAIRNESS
Bill S-201: The Beginning of the End to Genetic Discrimination in Canada
Rare Disease Review – January 30, 2017
Erica Peacock pens an in-depth essay about Bill S-201, and what will hopefully be the end of genetic discrimination in Canada. Read the full piece here.
HSC NEWS
Eli and the Straw Man steps up for Huntington Society
Niagara This Week – February 9, 2017
For the members of Eli and the Straw Man there is one cause that has always been particularly important. Last year the Niagara Falls indie folk-rock band toured the west coast, raising awareness for the Huntington Society of Canada. Read the full piece here.
Frustrated widow wants Liberals to expand assisted dying rules 2 years after landmark decision
CBC – February 7, 2017
Innerkip, Ontario-native John Schreurs travelled to Switzerland last September to end his life because he didn’t qualify under Canada’s new law. Read the full article here.
Eli & The Straw Man take aim at Huntington Disease
Niagara Falls Review – January 31, 2017
After hitting the road last year for a series of fundraising shows raising awareness about the fatal hereditary disease, the band was back on home turf this past Saturday, February 11th, at the Seneca Queen Theatre in Niagara Falls. See the full piece here.
Champions of Hope important to the Huntington Society
Weyburn This Week – January 27, 2017
North American HD Youth Camp 2017 Applications Now Open!
HDYO – January 25, 2017
After the great success of the North American camp last year, the Huntington’s Disease Youth Organization (HDYO) is very happy to announce the opening of applications for the camp again this year! Click here for more information.
South Vancouver Island Chapter Looking for Volunteers
The Times Colonist – January 24, 2017
The South Vancouver Island Chapter of the Huntington Society of Canada is on the lookout for volunteers! Read the full piece here.
Record Receives National Award
Selkirk Record – January 19, 2017
The Selkirk Record covers the National Award of Merit they received during last year’s National Conference in Halifax, Nova Scotia. For the full piece, please click here. See Page 21 of the January 19th edition of The Selkirk Record.
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.
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.
Cross Canada Info On Planning for Illness
NIDUS Personal Planning Resource Centre and Registry
NIDUShas together basic information that helps those in all provinces/territories across Canada to get started with personal planning. Click here to take a look and find your province or territory.
RESEARCH NEWS
The benefits of migration, highlighted in Huntington disease
HDBuzz – February 10, 2017
Is HD a developmental disease? HD stops neurons migrating in the developing brain, but maybe we can get them going again. Dr. Michael Flower takes a look. Read the full piece 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 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 28, 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 – January 2017
Check out the latest updates in Enroll-HD’s monthly bulletin here.
